IN THIS ISSUE:
06 LIVING WITH CYSTIC FIBROSIS: I’M LAURA BONNELL AND THIS IS MY STORY THE BONNELL FOUNDATION
16 FIGHTING DAILY TO END BREAST CANCER MICHIGAN BREAST CANCER COALITION
28 CHANGING THE TRAJECTORY OF ARTHRITIS AND CHRONIC PAIN THE ARTHRITIS FOUNDATION
30 SUPPORTING SICKLE CELL PATIENTS SICKLE CELL DISEASE ASSOCIATION OF AMERICA
WINTER 2022
A magazine showcasing Michigan’s biosciences industry
PATIENT ADVOCACY Fighting the Challenges of Disease
MONEY DOESN’T INSPIRE GREAT IDEAS. GREAT IDEAS INSPIRE MONEY. ENTREPRENEURSHIP & INNOVATION MEDC is here to help bring great ideas to life, right here in Michigan. We’ll help you gain access to investors, expose you to SmartZones, Michigan’s network of regional tech incubators, and connect you to local university resources. Whether you’re a one-person startup or and access to capital that can help your business grow. Learn more at michiganbusiness.org/entrepreneurship
PRESIDENT’S MESSAGE For too long patient and disease communities have encountered barriers to accessing care — often created by inequitable social determinants in health systems — that inhibit their ability to focus on wellness. In practice, patient voices have been drowned out by other stakeholders in the healthcare system. Yet, patients, and their surrogates, are the most knowledgeable about their needs. Patients face a myriad of challenges that extend beyond their disease or condition, including unmet medical needs, disruptions to employment and the resultant financial toxicity, difficulty in navigating bureaucracies, access and affordability concerns, negative impacts on family and quality of life, and more. Thus, their voices are essential to affecting meaningful change. As a result, patient advocacy — wherein patients as individuals and/or organizations concerned with specific disorders or diseases band together to be heard — is growing. Advocate influence is increasingly seen throughout the biopharmaceutical and medical technology industries, provider and payer systems, regulatory processes and public policy, and is critical in ensuring that patient needs and wishes are at the center of every healthcare decision. This increase in patient focus improves individual and community health outcomes, reduces health disparities, and guides health policy goals and funding decisions.
“For the biosciences industry, patients underlie the very essence of its existence. Whether medical devices, therapeutics, diagnostics and testing, or digital health technologies...”
This issue of BioMatters® introduces the reader to a small segment of the patient and disease advocacy community. The stories herein provide a glimpse of the challenges facing patients and their caregivers. For the biosciences industry, patients underlie the very essence of its existence. Whether medical devices, therapeutics, diagnostics and testing, or digital health technologies, the bio-industry’s products are developed to change the course of each individual life impacted by disease for the better. That’s why bioscience companies are now working in collaboration with patients and patient-focused advocacy organizations more than ever. In doing so, they are adopting patient-centric approaches to research and development, raising awareness of diseases and the plight of patients, helping build capacity to diagnose, treat, and care for individuals with disease, and advancing public policies that address the many issues related to accessing life-changing treatments. MichBio, as the statewide biosciences industry association, is pleased to be at the intersection between bioscience innovators and the patients they serve. We welcome the opportunity to engage with patients and patient advocacy groups (we offer complimentary membership to them), help be a champion and facilitator, and ensure that the patient voice is truly heard. Sincerely,
STEPHEN RAPUNDALO, PHD President and CEO, MichBio
BIOMATTERS | PATIENT ADVOCACY | WINTER 2022
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MichBio is the biosciences trade association for the state of Michigan. Our goal is to drive the growth of the state’s bio-industry through advocacy, education, connections, and supportive resources.
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Tom Ross Grand River Aseptic Manufacturing President and CEO John J.H. Schwarz, MD Former U.S. Representative Uma Sharma, PhD MMS Holdings Chief Scientific Officer
BioMatters is published bi-annually to showcase Michigan’s bioscience industry. Much of the content is submitted by MichBio member companies. Interested in submitting an article or advertising in a future issue? CONTACT ALISHA BROWN AT ALISHA@MICHBIO.ORG. BIOMATTERS | PATIENT ADVOCACY | WINTER 2022
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Breakthroughs that change patients’ lives
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TABLE OF CONTENTS with Cystic Fibrosis: I’m Laura Bonnell 06 | Living and This is My Story The Bonnell Foundation
08 | Fighting Daily to End Breast Cancer 10 | Creating Pathways to Cancer Support for Michiganders Impacted by Chronic 12 | Advocating Lung Disease Michigan Breast Cancer Coalition
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New Day Foundation for Families n Healthcare
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COPD Foundation
14 | Supporting Patients and Their Caregivers Like Family Jessica: Michigan Patient, CMU Student, and 16 | Meet Part of the MDA Family Michigan Family to Family
Muscular Dystrophy Association
Capture Ramps Up for $25M Lung Health 18 | Data Cohort Study The American Lung Association in Michigan
20 | Patient Engagement is Not an Abstract Concept are Experts in Their Own Lives, 22 | Youth Let’s Listen Ultragenyx Pharmaceutical Inc.
Michigan Organization on Adolescent Sexual Health
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24 | By the Numbers Breast Cancer Patients Focus on Recovery 26 | Helping Through Financial Assistance MichBio
Shades of Pink Foundation
28 | Changing the Trajectory of Arthritis and Chronic Pain and Supporting Sickle Cell Patients in the 30 | Identifying State Since 1971 The Arthritis Foundation
Sickle Cell Disease Association of America
32 | Pioneering New Medicines with a Human Touch Takes Collaboration to Save Lives from Metastatic 34 | ItBreast Cancer Bristol Myers Squibb
Susan G. Komen
36 | Migraines of Michigan Families Through Cancer’s Isolation, 38 | Supporting Chaos and Heartbreak American Chronic Pain Association
30 WANT TO RECEIVE BIOMATTERS?
Blood Cancer Foundation of Michigan
Visit michbio.org/subscribe
40 | Ovarian Cancer: How Much Do You Know? Michigan Ovarian Cancer Alliance
BIOMATTERS | PATIENT ADVOCACY | WINTER 2022
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THE BONNELL FOUNDATION
LIVING WITH CYSTIC FIBROSIS: I’m Laura Bonnell and This is My Story
BY LAURA BONNELL, EXECUTIVE DIRECTOR, THE BONNELL FOUNDATION
Since the age of 12, I knew I would be a news reporter — covering breaking news, feel good stories, and educating the public on so many different topics. The curiosity I had, and desire to get answers, is what made me a great reporter, and why people trusted me to get accurate information. I had no idea at the time just how important being a news reporter would be in my life. In 1989, I took a year off from news reporting to do some public relations work for the Washtenaw United Way (WUW). That year the gene that causes cystic fibrosis was discovered. Dr. Frances Collins, of the University of Michigan (currently Director of the National Institute of Health) was recognized as a news conference for his contributions in the Genome Project that discovered the cystic fibrosis gene. I was at the news conference on behalf of WUW in case reporters needed more information — that news conference was my first encounter with cystic fibrosis. Fast forward to 1993, I was newly married to my husband Joe and I had left TV reporting for an all-news radio station in Detroit. Life was perfect. Our first child, Molly, was born in 1994. She was happy and looked healthy, but something was wrong. I knew it. Molly’s pediatrician dismissed my concerns and told me I was a first time Mom, and that I should just “go back to work”. I listened to that doctor, but I just knew something wasn’t right. Molly had classic CF symptoms — greasy stool, distended stomach, and she tasted salty when we kissed her. In my mind, I was right
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about this. So, I demanded Molly be tested for CF — I was doing a lot of reading, and I was convinced that Molly had cystic fibrosis. At 3-months-old Molly was given a sweat test (it measures the concentration of Chloride that is excreted in sweat — a standard test for cystic fibrosis). I was driving to a breaking news story when the doctor called me with the news I already knew: Molly had CF. The doctor apologized for not believing me. Since then, we’ve both learned a lot, and she is my friend to this day.
Diagnosis Day: Joe and I sat on the porch, drinking a beer and crying. We had so much to learn about CF, but what we knew for sure was that Molly was going to have a normal life. This disease wasn’t going to hold her back. It was a difficult decision, but we decided to have a second child. We knew there was a 1 in 4 chance of having a child with CF with each pregnancy, but how could it happen twice, right? Our second daughter, Emily, was also born with CF. We stopped at two, and we’re happy to have these beautiful girls in our lives.
THE BONNELL FOUNDATION
Ultimately, in 2010, after spending 16 years learning everything I could about CF, the systems, the responsibilities, and the realities of living with the disease, I did just that — I started the Bonnell Foundation.
Around that time, we got involved with the Cystic Fibrosis Foundation. We started fundraising and met other CF parents. There was so much to learn. In those early years I noticed not even the CF Foundation was able to do enough for CF parents — we needed mentoring from other parents, information, knowledge about CF clinics, financial assistance, advocacy and more. In that first year, I knew I had to start my own Foundation to make it happen. Ultimately, in 2010, after spending 16 years learning everything I could about CF, the systems, the responsibilities, and the realities of living with the disease, I did just that — I started the Bonnell Foundation.
Easing the Burden of CF: The Bonnell Foundation: Living with Cystic Fibrosis began Living with cystic fibrosis began to help families cope with and understand the disease, access a like-minded network, ease the financial burden of CF, and generally do everything possible to help parents provide the most normal life possible for their own children — like we had always worked to do for Molly and Emily. Since then, we have given out about $500,000 in financial assistance, lung transplant grants and college scholarships to people all over the Country, and right here in Michigan. We have helped educate parents about CF and I have heard from hundreds of families that we helped them get to a diagnosis for their child with an educational article we wrote early on (Costco connection December 2010.Volume 25. Number 12). We helped families acquire PPE during the pandemic, have helped with dental costs, connected families with a support system who understands them, provided assistance for children at school (so they can carry digestive enzymes to school and have access to services needed for a child with CF), shared information about legislation pertaining to CF, and so much more.
My work as a news reporter allowed me to amplify information about CF. The radio station I worked at for most of my career, WWJ Newsradio 950, has aired public service announcements (PSA) about cystic fibrosis since Molly was diagnosed — even now, all these years later, they continue to do so. They allowed me to share my story and raise awareness in Michigan so that other families knew what to look for when they had a feeling something wasn’t right with their child. My first hope with the Foundation was to help parents in the ways we needed it when our girls were young, my second was to raise awareness in the general population — we are so grateful for all of the volunteers, donors, and sponsors who have allowed to do both and continue to keep us strong.
Getting through the pandemic has been a challenge, the need is greater than ever. Please continue to help us in this fight to raise awareness and funds for this disease.
THEBONNELLFOUNDATION.ORG OR CALL 844.CYSTIC.FIBROSIS
BIOMATTERS | PATIENT ADVOCACY | WINTER 2022
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MICHIGAN BREAST CANCER COALITION
Fighting Daily to End Breast Cancer BY MARY LYNN FAUNDA DONOVAN, PRESIDENT, MICHIGAN BREAST CANCER COALITION
Michigan Breast Cancer Coalition (MiBCC) is a non-profit advocacy organization dedicated to persuading lawmakers to do everything possible to end breast cancer. Breast cancer is a political issue as it is lawmakers who decide research funding levels and legislative priorities. The Coalition works tirelessly to have trained advocates at the table asking the tough questions on how dollars are spent to advance research that identifies promising opportunities, tools, technologies, and ideas to end breast cancer. This includes support for research funding that focuses on preventing the development and metastasis of breast cancer — where the disease has spread from the breast to bones, lungs, liver, or other organs. But the Coalition can’t do it alone — its grassroots network of trained advocates works to influence legislation, increase research funding, educate the public and advance initiatives nationally, statewide and locally in the fight against breast cancer. MiBCC also provides up-to-date, evidenced-based information for breast cancer advocates, survivors, and patients about treatment, diagnosis, and prevention. In the effort to influence federal legislation, Coalition members are active in and serve on the board of the National Breast Cancer Coalition (NBCC) to ensure ongoing funding of breast cancer research, advance quality health care for all, support advocate training through Project LEAD and set the right scientific priorities to achieve significant progress in ending breast cancer.
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Additionally, members engage in ongoing communications with lawmakers in Washington, D.C., and in the State of Michigan to influence legislation important to fighting breast cancer. One of MiBCC’s legislative priorities is to increase breast cancer research funding for the Department of Defense Breast Cancer Research Program (DOD BCRP). As a result of NBCC’s grassroots advocacy, the DOD BCRP was created in 1992 to eradicate breast cancer by funding innovative, high-impact research through a partnership of scientists and patient advocates. The DOD BCRP is widely viewed as an innovative, unique and efficient medical research model that has proven to be accountable to the public and has produced extraordinary results. The Coalition is also advancing legislation to improve the lives of the more than 168,000 women and men in the United States living with metastatic breast cancer (MBC). There is no cure for this type of breast cancer. Designed by NBCC, the Metastatic Breast Cancer Access to Care Act would waive the five-month and two-year waiting periods for Social Security Disability Insurance (SSDI) and Medicare benefits, respectively, for metastatic breast cancer patients who qualify for SSDI. Based on the limited life expectancy of individuals with metastatic disease, an average of three years, there is no time to wait for these benefits. The coalition asks that you contact your legislators to ask them to support this legislation. MiBCC’s other top legislative priority is to preserve the Medicaid Breast and Cervical Cancer Treatment Program.
MICHIGAN BREAST CANCER COALITION
One of MiBCC’s legislative priorities is to increase breast cancer research funding for the Department of Defense Breast Cancer Research Program (DOD BCRP).
Congress enacted the Breast and Cervical Cancer Treatment Act in 2000 after years of NBCC grassroots lobbying and influence. MiBCC remains committed to ensuring all women and men screened and diagnosed with breast cancer have access to the treatment they need. In addition to advancing legislation, the Coalition influences national breast cancer research by serving as a reviewer for the DOD BCRP to bring the patients’ perspectives and sense of urgency for high impact, breakthrough research. Coalition members also influence statewide breast cancer research by serving on the University of Michigan Breast Cancer Advocate Advisory Committee, which brings patients and researchers
together to develop better study protocols and promote awareness of clinical trials, and affect statewide breast cancer initiatives by participating as a member of Michigan Cancer Coalition to address health disparities.
The Michigan Breast Cancer Coalition invites you to join its grassroots coalition to have a seat at the table and make sure legislators do everything possible to end breast cancer.
To learn more and add your voice, join the MiBCC subscriber list at MIBCC.ORG and visit us on Facebook, Instagram, Twitter, and LinkedIn.
BIOMATTERS | PATIENT ADVOCACY | WINTER 2022
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NEW DAY FOUNDATION FOR FAMILIES
Creating Pathways to Cancer Support in Healthcare
BY GINA KELL SPEHN, CO -FOUNDER AND PRESIDENT, NEW DAY FOUNDATION FOR FAMILIES
Cancer is far too often a health crisis followed by a financial crisis. In fact, 70 percent of adult cancer patients and over 30 percent of families who have a child with cancer will experience debilitating financial hardship. This financial burden not only makes it nearly three times more likely that a patient will file for bankruptcy, but also directly lowers a patient’s chance of survival. From cutting back on medication, to skipping doctor’s appointments, the coping measures taken by patients can have dire consequences.
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New Day Foundation for Families are needed to step in and provide immediate financial assistance and coaching, as well as emotional support, to patients. Through careful financial assessments, often combined with emergency relief paid on behalf of families directly to companies such as DTE, Consumers Power, Ally Financial, Allstate, and banks and mortgage lenders, New Day is working to lift the overwhelming burden from the shoulders of patients who are riddled with anxiety over simply maintaining their basic household needs.
Additionally, for families and patients coping with a cancer diagnosis, the emotional impact of the fear, anxiety, uncertainly and time-sensitive decisions that occur in the immediate aftermath of the diagnosis can push a person past their emotional threshold. Carrying the weight of these financial and emotional burdens, families face additional stress that can negatively affect well-being, access to care and treatment outcomes.
New Day partners with more than 50 hospitals across Michigan to identify, support and bring hope to cancer patients. This is much more than financial support; it is an evolution in patient-centered healthcare, whereby healthcare organizations — from doctors to social workers — first understand the critical need for patients to receive emotional and financial support during cancer treatment, and second, can help to create a pathway for patients to access that support. This is about creating better treatment outcomes for families facing cancer and ultimately, changing lives.
Reaching families before they hit critical breaking points, whether financially, emotionally or both, is vital to improving cancer care. Organizations like
For Jenni Davis, a single mother of two facing cancer, simply trying to provide the food and shelter to her family during treatment became overwhelming.
MICHBIO | michbio.org
NEW DAY FOUNDATION FOR FAMILIES
“Sometimes it makes me cry with anger when people tell me I just need to ‘relax’ and ‘look after myself ’ because I know that my first priority is actually looking after my children — and ensuring they are fed and sheltered,” “Sometimes it makes me cry with anger when people tell me I just need to ‘relax’ and ‘look after myself’ because I know that my first priority is actually looking after my children — and ensuring they are fed and sheltered,” said Davis. “Only other single moms understand the driving fear of something going wrong and making it impossible to do whatever it is that our children need. That fear motivates me to get up and go to work when the chemo is telling me I should be recovering. Support from New Day Foundation provided me with a safety net that meant I could breathe a bit easier.” Statistics show that if a cancer patient is worried about finances, their risk of dying is roughly double. Additionally, 88.4 percent of New Day families surveyed said that working with New Day helped them maintain medical compliance during treatment, rather than cutting corners, skipping medication and missing appointments due to high costs. Developing a financial plan to educate, prepare, and support families who face this often-overlooked side-effect of cancer will help New Day initiate policy changes and engage corporate leaders to find long-term solutions to this problem. To this end, New Day is a partner of the national organization Family Reach, which refers to this as a Financial Treatment Program. New Day is also a member of the Michigan Cancer Coalition of Non-Profits, made up of local organizations with programs that complement New Day’s mission
and work in the cancer space. Additionally, New Day regularly uses resources provided through the nonprofit sector including the Nonprofit Network, Michigan Cancer Consortium, Michigan Nonprofit Association, Association of Fundraising Professionals, Network for Good, and Detroit Philanthropy. New Day Foundation for Families, a 2021 TopRated NonProfit by GreatNonprofits and Gold Level Guidestar organization, is a Rochester Hills, Michigan nonprofit organization dedicated to reducing the effects of financial toxicity and emotional stress caused by cancer. Programs are intended to have a positive impact on treatment outcomes and survivorship.
New Day offers financial grants in the form of short-term bill payment services, as well as emotional support programs for families who have children under the age of 18 in the home as they face the burdens that accompany the diagnosis and treatment of cancer.
FOUNDATIONFORFAMILIES.ORG
BIOMATTERS | PATIENT ADVOCACY | WINTER 2022
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COPD FOUNDATION
ADVOCATING FOR MICHIGANDERS IMPACTED BY CHRONIC LUNG DISEASE BY MIKE HESS, MPH, RRT, SR. DIRECTOR OF PUBLIC OUTREACH AND EDUCATION
Many chronic health problems are familiar to the public — Diabetes, Heart Disease, Arthritis — but there’s one that has largely escaped the public eye. According to the Centers for Disease Control and Prevention, Chronic Obstructive Pulmonary Disease, or COPD, has become the third leading cause of death in Michigan as of 2020 — this despite the fact that the majority of the population knows little or nothing about the condition.1 Of course, the problem is not unique to Michigan — COPD is a leading cause of death across the country and worldwide, yet it receives little recognition. In the United States, COPD is a significant cause of disability and the 4th leading cause of death, but ranks approximately 176th in research funding by the National Institutes of Health (NIH).2 Many people have never heard of the condition nor realize they’re at risk, which often means they don’t get diagnosed until significant damage is already done to their lungs and their quality of life. Raising awareness about COPD and working toward better treatments (and one day a cure) for those living with the disease, is the core mission of the COPD Foundation. Like many conditions, COPD is best managed when detected early. Unfortunately, most people rarely think about their breathing until they absolutely must.
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Often people adapt their lifestyles to accommodate for shortness of breath and other symptoms. Maybe they start taking the elevator instead of the stairs, or they figure they’re getting older and out of shape and need to start hitting the gym more often. They may not realize they’re one of the roughly 1 in 8 Michiganders living with COPD, nearly half of whom never get diagnosed properly. That’s why the COPD Foundation would like people to think a little more closely about their breathing. Education and communication for patients and providers are critical to a healthy, cooperative approach to disease management. Additionally, the COPD Foundation is committed to supporting clinicians caring for those with COPD. One woman, living with COPD in Kalamazoo, told us that her most significant issue is getting all her clinicians (primary care and specialists) to coordinate care. Each one has her on different meds, and the regimens can be complicated, making it challenging to keep track. To that end, the COPD Foundation provides patients with free downloadable education materials and a COPD Pocket Consultant Guide mobile app for iOS and Android with a COPD Wallet Card to keep medications and vaccines in one central location and share with providers. Many people with COPD require various equipment, like nebulizers for certain inhaled medications, oxygen
COPD FOUNDATION
The COPD Foundation provides patients with free downloadable education materials and the COPD Pocket Consultant Guide mobile app for iOS and Android. The COPD Pocket Consultant Guide helps patients keep medications and vaccines in one central location to share with providers.
MIKE HESS, MPH, RRT, Sr. Director of Public Outreach and Education at the COPD Foundation.
equipment, or ventilators. These add another layer of complexity to care coordination. The COPD Foundation is working on several initiatives to help people in Michigan and all 50 states along their COPD journey. For example, the COPD360coach program connects English and Spanish-speaking people with COPD to peer coaches specially trained to educate and support COPD questions and educational needs. We also host a COPD Community Support Line at 1-866-316-COPD to help link people with the resources they need to manage their COPD effectively. The BRIDGE project focuses on amplifying the voices of people with COPD and their caregivers in research projects. Impactful solutions will not be found unless the right questions are asked — that starts with incorporating people with COPD into the research process. The Oxygen360 project aims to foster the innovation of new oxygen delivery systems and improve education for safe and effective oxygen therapy. Through Oxygen360, the Foundation holds monthly OxyTalk virtual meetings (open to anyone interested in participating) to help people get answers from clinicians and other oxygen users The Foundation is also proud to support local initiatives that benefit the COPD community. In 2018, the organization offered a letter of support to the Think COPD program at WMed Health in Kalamazoo. Run by a state advocacy captain, Think COPD worked to grow awareness of COPD through a multimedia campaign including billboards & TV news spots, as well as lung health screening events in some of Kalamazoo’s
historically underserved communities. These events helped to lower barriers to diagnosis and allow for more effectively managed care, earlier than ever before. Many of these programs have been on hold during the pandemic, but lung health screenings will return to the Kalamazoo area soon. There’s much work to be done, but with Michigan having a relatively high prevalence of COPD compared to other states, it’s more important than ever to get people thinking about COPD risk factors. Often COPD is referred to as a “smoker’s disease,” however, up to 25% of cases are caused by things other than tobacco including, for example, the smoke and particulates generated by wood stoves used for cooking and heating in rural areas of Michigan.3
The job of the COPD Foundation is to help ensure anyone at risk for COPD, living with COPD, or caring for someone with COPD, gets the best care possible because everyone deserves to breathe easy.
Learn more about the COPD Foundation and COPD Awareness Campaign, #LaceUpforLungs, by visiting the Foundation at COPDFOUNDATION.ORG 1 Source: https://www.cdc.gov/nchs/pressroom/states/michigan/mi.htm 2 Source: https://report.nih.gov/funding/categorical-spending#/ 3 Source: https://www.copdfoundation.org/What-is-COPD/Understanding-COPD/ What-Causes-COPD.aspx
BIOMATTERS | PATIENT ADVOCACY | WINTER 2022
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MICHIGAN FAMILY TO FAMILY
Supporting Patients and Their Caregivers Like Family
BY KRISTEN REESE, MICHIGAN PUBLIC HEALTH INSTITUTE PROJECT COORDINATOR
When Kristen Reese’s daughter was diagnosed with a rare genetic neurodevelopmental disorder in 2001, Kristen found herself thrust into the often-frustrating worlds of healthcare and social services.
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During the eighteen months it took to get her daughter’s diagnosis, she was overwhelmed by a multitude of specialist appointments and diagnostic testing. She struggled to figure out the maze of social service programs that all had different eligibility requirements, policies, and procedures. As a single mother of three children, she juggled with the demands of providing care for her child, including medications, managing new equipment, and carrying out new therapies. And while expenses for deductibles, co-pays, and out-of-pocket medical costs were adding up, she lost her job in the insurance industry due to the vast amount of care her daughter required.
For the next four years, Kristen remained unemployed in order to focus on getting the care, support, and services her daughter needed. This meant working with a variety of different providers, including doctors, therapists, case managers, and social workers. Kristen found that one of the greatest sources of help and support was the connection with other parents of children with similar health conditions. She found other parents understood the challenges she faced, and their help was vital in improving her ability to make the best care decisions for her daughter. With that support, over time, Kristen learned how to navigate the systems providing services to her daughter.
MICHIGAN FAMILY TO FAMILY
Fast forward twenty years and Kristen is now employed full-time, and her daughter is getting the care, supports, and services she needs to live her best life. Thanks to the skills and knowledge Kristen gained from her experience, she currently works in a position that allows her to share this experience to help other parents struggling with new situations and complex challenges related to raising a child with special health care needs. This position is with MPHI as Project Coordinator for Michigan Family to Family Health Information Center.
When Kristen reflects on how she ended up at Michigan Family to Family, she can’t help but wish that this type of support existed when her daughter was first diagnosed. “I remember how alone I felt,” she said, “Having someone available to help, who actually understands what you are going through, means everything when you’re struggling.” This memory is what drives her to share her knowledge and experience with other families. “My goal is to help make navigating healthcare and other service systems easier for the families I connect with.”
Michigan Family to Family is a grant project funded by the Health Resources and Services Administration (HRSA), Maternal Child Health Bureau (MCHB) under grant H84MC26214. Michigan Family to Family is uniquely able to help other families because it is staffed by family members, like Kristen, with real-life experience navigating complex healthcare and other service systems. They work with families of children with any disability or special health care needs, along with the providers who serve them.
Services provided by Michigan Family to Family are free to families and professionals. There is a Family to Family project in each state, the District of Columbia, five U.S. territories, and three Family to Family projects serving tribal communities. Each Family to Family project is staffed by highly skilled, knowledgeable family members who have first-hand experience and understand the challenges faced by families of children with special health care needs. These qualified employees provide critical support to families, particularly families of children with complex medical needs and those from diverse communities.
Michigan Family to Family provides information, education, training, support, and referral services to families across the State of Michigan, as well as offering a repository of resources on their website. One of the virtual trainings provided by Michigan Family to Family, Navigating Healthcare, gives Kristen the opportunity to share tips and tools she learned along the way with other parents of children with special health care needs. “I enjoy empowering families to be knowledgeable, equal partners within the healthcare system,” she said. “I get to share what I wish I knew when my daughter was younger.”
F2FMICHIGAN.ORG
Michigan Family to Family staff also collaborate with health and social service systems to provide input and guidance on health programs and policy whenever possible. They focus on partnerships, outreach, and providing families with the knowledge they need to be informed decision-makers.
BIOMATTERS | PATIENT ADVOCACY | WINTER 2022
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MUSCUL AR DYSTROPHY ASSOCIATION
MEET JESSICA:
Michigan Patient, CMU Student, and Part of the MDA Family BY ALISHA BROWN, MARKETING AND COMMUNICATIONS DIRECTOR, MICHBIO, BASED ON SOURCE MATERIAL AND INTERVIEW PROVIDED BY THE MUSCULAR DYSTROPHY ASSOCIATION
For more than 70 years, the Muscular Dystrophy Association (MDA) has been committed to transforming the lives of people living with muscular dystrophy, ALS, and related neuromuscular diseases. In Michigan, more than 7,500 individuals live with these conditions. One such individual is Jessica. “My family has been part of the MDA family since my diagnosis at 1 year old,” says Jessica, “I am now 20, and it is very difficult to express how MDA has impacted my life.” From helping Jessica’s parents navigate the care and treatment landscape after her diagnosis, to providing access to a support system of other patients and families, and giving Jessica the tools she needed to advocate for herself and be as independent as possible, the MDA is a wrap-around service that is invested in every person and family at every stage of their life.
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I developed life-long friendships and gained experiences that have helped me as an adult in ways that I didn’t even see coming.” As a teen, Jessica was named the State of Michigan MDA Ambassador for two years. As an Ambassador, Jessica spent time speaking on behalf of patients, telling her story, and educating others on neuromuscular diseases and the services provided by the MDA. “That experience,” says Jessica, “led me to my chosen career. I am currently studying Integrated Public Relations with a double minor in event management and disabilities studies at Central Michigan University.”
As part of that service, MDA partners with the Catholic Foundation of Michigan to provide funding for summer camp for MDA families. This traditionally in-person camp, that has temporarily transitioned to a virtual format, serves thousands of children and young adults every year with programming designed to help them learn vital life skills and gain independence — all at no cost to families.
Jessica’s college experience is supported by access to efficient and expert care. MDA has partnered with Michigan healthcare providers to create six MDA Care Centers located at Beaumont Children’s Hospital, Mercy Health Saint Mary’s, Michigan State University Clinical Center, University of Michigan, Helen DeVos Children’s Hospital, and Children’s Hospital of Michigan. These six Michigan locations are part of the largest network of multidisciplinary clinics providing best-in-class care for neuromuscular diseases at more than 150 of the nation’s top medical institutions.
“Once I started to go to camp,” continued Jessica, “MDA gave me the opportunity to be myself and learn how to do things without my parent’s help. Over the years of camp,
“I am currently a patient at the multi-disciplinary MDA Care Center at Royal Oak Beaumont,” says Jessica. “The ability to see all the disciplines I need to see in a single
MICHBIO | michbio.org
MUSCULAR DYSTROPHY ASSOCIATION
“My family has been part of the MDA family since my diagnosis at 1 year old,” says Jessica, “I am now 20, and it is very difficult to express how MDA has impacted my life.”
appointment might make those appointments seem very long. However, when I have to see all these disciplines on separate days with separate appointments, it takes so much longer. I feel that my care is better coordinated because they are all working together and can adjust their plan of care according to what other disciplines are doing.” “What’s more, my experience at camp, as the MDA Ambassador, and with such a coordinated care team, has enabled me to interview and hire my own care staff. I currently depend on 8-9 different people for my care instead of just my parents. Without my interactions at camp and with my care team, that transition would have been much more difficult.” This network of care providers, coupled with the MDA’s investment over seven decades of more than $1 billion to the discovery of therapies and cures — making them the largest source of funding for neuromuscular disease research outside of the federal government — has led to breakthrough innovations such as the development of Spinraza. Approved in 2016, Spinraza became the first approved drug used in treating spinal muscular atrophy (SMA). SMA is a rare genetic disorder affecting the central nervous system, peripheral nervous system and voluntary muscle movement. SMA patients experience weakness in their voluntary muscles, especially those closest to the center of the body, such as the shoulders, hips, thighs, and upper back, and can have difficulty breathing and swallowing, and experience curvature of the spine.
“Treatment! Wow, my parents were told when I was diagnosed, 19 years ago, that there was no treatment or cure,” says Jessica. “Without the support of MDA, I don’t believe we would have a treatment available today. I am so grateful for the opportunity to receive treatment and change the course of my disease. Since I started receiving treatment in 2017, I have gained strength that we were told would never happen. It is hard to explain, but for me — my body feels easier to move, it’s easier to breathe, I have more energy, I can eat better — just to name a few. This has allowed me to focus more at school and move on to college life.” To keep up with the accelerating pace of research into genetic disorders and connect multi-disciplinary researchers around the globe, MDA operates its MOVR (neuroMuscular ObserVational Research) Data Hub. This is the first and only data hub that aggregates clinical, genetic, and patient-reported data for multiple neuromuscular diseases to improve health outcomes and accelerate drug development.
The MDA looks forward to a day when all who are diagnosed with neuromuscular diseases have access to treatments and cures that improve their quality of life and enable them to live independently and joyfully, and is committed to supporting that vision for as long as it takes to achieve.
Learn more about the Muscular Dystrophy Association at MDA.ORG
BIOMATTERS | PATIENT ADVOCACY | WINTER 2022
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THE AMERICAN LUNG ASSOCIATION IN MICHIGAN
Data Capture Ramps Up for $25M Lung Health Cohort Study
BY SHANKAR MADHAVAN, LOCAL LEADERSHIP BOARD CHAIR OF THE AMERICAN LUNG ASSOCIATION IN MICHIGAN
Historically, lung health has been studied only after the appearance of chronic lung disease. Little has been done, however, to learn about the evolution of respiratory disease and determine how a young, healthy adult’s lung function declines over time. This information could help uncover the key source(s) and potential biomarkers of various lung diseases, perhaps leading to a significant finding like the cholesterol discovery for cardiovascular health. The American Lung Association and Northwestern Medicine have been awarded a $24.8 million National Institutes of Health (NIH) grant to conduct the first federally funded U.S. cohort study of millennials. The American Lung Association Lung Health Cohort will be the largest study ever funded for the Lung Association. Though similar studies have been conducted for heart disease, this is the first ever to examine lung health in such a way that the findings can be translated into actions for preventative care.
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HERE ARE SOME HIGHLIGHTS FROM THE UPCOMING STUDY: • It will follow 4,000 young adults at the age of peak lung health, from 25 to 35 years old, from 17 different regions across the U.S. This large, geographic cross-section should paint a clear picture of lung health across the nation. • Each participant will be tracked for six years. They’ll provide information on lung function, respiratory symptoms, lifetime residential and occupational histories, health behaviors, fitness, biomarkers, and chest imaging. • This study will use low-dose CT scans to track intermediate stages of lung injury and abnormalities in the participants’ windpipes. • The American Lung Association’s Airways Clinical Research Centers (ACRC) Network will conduct the research, working closely with researchers at Northwestern, Johns Hopkins Medicine, Brigham and Women’s Hospital, University of Michigan, University of Alabama-Birmingham, Beth Israel Deaconess Medical Center and all the centers of the ACRC network.
THE AMERICAN LUNG ASSOCIATION
“This promises to be among the most innovative and significant longitudinal studies conducted to-date during this century,” — DR. RAVI KALHAN, M.D., MS, Northwestern Medicine Pulmonologist
“This first-of-its-kind study will engage the broader scientific community in an effort to understand respiratory disease and will serve as a pivotal step forward for the lung health and lives of all Americans,” — HAROLD WIMMER, American Lung Association President and CEO
Additionally, researchers hope to determine whether air pollution, inhalants like marijuana and e-cigarettes, and other outside factors have a correlation with lower lung function. By identifying these factors, we can not only help people catch lung disease earlier but also work to prevent it. “This promises to be among the most innovative and significant longitudinal studies conducted to-date during this century,” Dr. Ravi Kalhan, M.D., MS, Northwestern Medicine Pulmonologist and American Lung Association Lung Health Cohort Principal Investigator explained. “The promise of the American Lung Association Health Cohort Study is that by filling in this knowledge gap about how chronic lung diseases evolve, scientists can propose new interception and prevention strategies that may effectively reduce the physical, emotional, financial and social burden of chronic lung disease.” For 115 years, the American Lung Association has made it our mission to help fight lung disease through extensive medical research. We have funded breakthroughs in the fight against tuberculosis, identified
genes that cause the development of lung cancer and cystic fibrosis, and developed new ways to treat respiratory distress syndrome. In 1999, the Airways Clinical Research Centers (ACRC) Network was established to focus its efforts on asthma and COPD. Now the nation’s largest notfor-profit network of clinical research centers, the ACRC will utilize all its resources to conduct this groundbreaking study. “This first-of-its-kind study will engage the broader scientific community in an effort to understand respiratory disease and will serve as a pivotal step forward for the lung health and lives of all Americans,” American Lung Association President and CEO Harold Wimmer said. “The Lung Association is proud that our Airways Clinical Research Centers Network serves as an integral part of this important work.”
LUNG.ORG
BIOMATTERS | PATIENT ADVOCACY | WINTER 2022
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ULTRAGENY X PHARMACEUTICAL INC.
Patient Engagement is Not an Abstract Concept
SUBMITTED BY ULTRAGENYX PHARMACEUTICAL INC.
“There is nothing more powerful than treating patients who have never been treated before. Nothing is more uplifting and compelling than being in the room and treating a patient for the first time. I’ve been trying to recreate that moment over and over again.” — Dr. Emil Kakkis, Founder, CEO and President Rare diseases affect more people than cancer and AIDS combined. There are over 7,000 rare diseases affecting 30 million Americans. In fact, one in every 10 people is affected by rare diseases, half of whom are children. Of those children, 30% will not live to see their 5th birthday. Rare diseases also account for 35% of deaths in the first year of life. Notwithstanding the prevalence of rare diseases and their devastating effects, only 5% of rare diseases have an FDA-approved drug treatment. To address this unmet need, Ultragenyx has an ongoing commitment to develop first-ever approved treatments for rare and ultra-rare diseases and strives for majority access globally to medicines for patients who could benefit from them.
Founded in April 2010 by Dr. Emil Kakkis, Ultragenyx is headquartered in Novato, California, and has U.S. offices and laboratories in Bedford (MA), Brisbane (CA), Cambridge (MA), Salt Lake City (UT), South San Francisco (CA) and Woburn (MA). Ultragenyx’s European headquarters is in Basel, Switzerland, with additional offices in Amsterdam, Berlin and Paris. Ultragenyx’s Latin American headquarters is in Miami (FL), with offices in Bogotá, Buenos Aires, Mexico City and São Paulo. Ultragenyx employs more than 1,000 people globally, and has a diversified pipeline that includes 3 approved therapies and ~20 programs in clinical or preclinical development across multiple modalities (small molecule, biologic, gene therapy, mRNA and antisense oligonucleotides (ASOs)). ULTRAGENYX IS GUIDED BY THREE PRINCIPLES WITH RESPECT TO PATIENT ENGAGEMENT: • Address unmet need • Ensure access • Support the rare disease community
DR. EMIL KAKKIS Founder, CEO and President.
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ULTRAGENYX PHARMACEUTICAL INC.
Address Unmet Need Ultragenyx dedicates itself everyday to the goal of providing treatments where none currently exist. Twenty of the 21 diseases the company is targeting do not have an approved treatment that directly addresses the underlying disease in the majority of patients. All of Ultragenyx’s approved therapies are the first approved therapy for their respective condition that meets that requirement. Because only 5% of rare diseases have treatments available, the company believes it is of the utmost urgency to develop therapies as quickly as possible. As a result, Ultragenyx also believes it has a responsibility to utilize innovative development techniques, such as adaptive trial designs and seamless Phase 1/2/3 trials, to accelerate the drug development process. Ultragenyx sees the patient voice as the single greatest source of data in the drug development process. It’s important to understand the challenges facing people living with rare diseases and the burdens on their caregivers and families, and to understand how the therapies in development will affect their lives, so Ultragenyx researchers ask a lot of questions. Researchers engage patients in a two-way conversation to understand how the diseases affect their lives so they can provide the insight required to develop treatments that will be meaningful to them.
5.5
Average number of years from entering the clinic to approval compared to 7 to 7.5 years for our peers
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New evaluations or tools developed to improve rug development based on patient feedback
Ensure Access
Ultragenyx believes it has an obligation to develop the most effective medicines and ensure global majority access for patients who can benefit. The company is committed to pricing its medicines responsibly and ensuring any price increases are consistent with inflation adjustments. In the US, Ultragenyx ensures that no patient forgoes treatment for financial reasons, including affording copays or lack of insurance, and also provides pre-approval access to therapies when medically appropriate.
~
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Countries where patients have access to our therapies
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Patients treated via compassionate access with our medicines since 2013
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Support the Rare Disease Community Ultragenyx is committed to helping patients obtain early and accurate diagnoses, whether or not they have a disease that the company is studying, as well as helping the field move forward by sharing science and expertise to advance future development, whether by Ultragenyx or others. The company: •
Shares de-identified natural history data, as well as endpoints, methods and validations it has developed, with both physician groups and patients.
• Hosts an annual boot camp designed for patients and advocates who have started funding rare disease research and are looking to better coordinate and build structure around their efforts. • Conducts advisory boards and has long-term partnerships with patient organizations where it has learned patients’ and caregivers’ greatest challenges, and has used this information to develop specific programs and educational opportunities to address these needs.
70 80
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Individuals representing ~60 organizations attending our RARE Entrepreneur Boot Camp since its inception in 2018 Number of meetings our CEO and CMO have had since 2020 with families, patient groups and companies to share their expertise and provide drug development advice
ULTRAGENYX.COM
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MICHIGAN ORGANIZ ATION ON ADOLESCENT SEXUAL HEALTH
Youth are Experts in Their Own Lives, Let’s Listen BY TARYN GAL, EXECUTIVE DIRECTOR, MICHIGAN ORGANIZATION ON ADOLESCENT SEXUAL HEALTH
The Michigan Organization on Adolescent Sexual Health (MOASH) mobilizes youth voices, engages community partners, and informs decision makers to advance sexual health, identities, and rights. The organization works to ensure that young people in Michigan have access to sexual health education and sexual health services that are in line with best practices, meaning they are medically appropriate, non-shaming, traumainformed, and inclusive and affirming of youth who are most often ignored, silenced, and not represented in these spaces, including youth who are LGBTQIA+, are disabled, are expectant and/or parenting, are black, indigenous or people of color, have or have had an STI (including HIV), and others who hold historically marginalized identities. One need continuously highlighted by youth is to address the barriers they face when accessing sexual health services. Youth-driven assessments are powerful tools for generating meaningful feedback and resources for health centers serving adolescents. MOASH worked alongside members of their Michigan Youth (MY) Voice youth advisory council (YAC) to create the Youth Equity Assessment Tool (YEAT). YEAT is a “secret shopper” instrument to assess the youth friendliness of medical spaces (e.g., private practices,
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school-based health centers, health departments). The YEAT allows youth patients to evaluate a medical space as they move through a typical appointment. Sections include 1) outside, 2) waiting rooms, 3) bathrooms, and 4) clinic. Each section receives a score of Code Red, Yellow, or Green. A recent assessment of the YEAT, conducted by the Community Technical Assistance Collaborative (CTAC) at the University of Michigan, found it to be an important and user-friendly tool. Youth are paid for their time, energy, and expertise to conduct the YEAT assessment, as well as facilitate training to office staff and medical providers to address poorly scored areas. MOASH is intentional in its use of the tool - youth “secret shoppers” use the tool while receiving services that they need so as not to waste the time and resources of medical staff and facilities to conduct an assessment. Needs identified include 1) office staff not respecting the youth patients’ name and pronouns if different from what is on the medical chart; 2) clear communication from medical providers on what information is disclosed to parent/guardian, either by the medical provider themself or if billed to insurance; 3) medical staff making assumptions about a young person’s behaviors and identities; and 4) lack of information provided about youth rights related to sexual health care.
MICHIGAN ORGANIZATION ON ADOLESCENT SEXUAL HEALTH
THREE (OF MANY) WAYS MOASH IS MEETING THE NEEDS IDENTIFIED BY YOUTH:
• Advocating for policy that is responsive to, and informed by, best practices and youth voice, such as allowing Michigan minors to consent to vaccination (e.g., HPV, COVID), removing the parental consent mandate and judicial bypass process for access to abortion care, and allowing for condom availability in Michigan schools. MOASH conducts ongoing legislative tracking. • Providing training for staff and medical providers at healthcare facilities to ensure individuals have the skills and knowledge to create medical spaces that are inclusive and affirming of all young people. This includes topics such as a) raising awareness about the potential impact of how medical services are coded for insurance purposes and how those services will appear on an insurance statement; b) providing access to all gender restrooms; c) laws around what is/is not required to be disclosed to parents and how to inform youth patients around potential disclosure; and d) how to frame questions that do not assume a youth patient’s sexual orientation or gender identity. • Authentically engaging youth in all levels of this work, such as, policy development, training, programming, and evaluation. At MOASH, this includes having youth on the MOASH Board of Directors and having youth inform programming and operations. For this specific YEAT work, this includes having youth continuously update the YEAT, implement the YEAT, review and analyze YEAT findings, and participate in trainings for folks who work in medical spaces to address the areas of the YEAT that were scored low.
Youth are experts in their own lives and it is imperative that medical spaces are responsive to their requests for changes that reduce barriers to accessing sexual health services in Michigan.
YOUTH RESPONSES TO YEAT QUESTIONS:
“...they didn’t really talk about any confidentiality...or explain to me what I was signing and what it meant until I asked and they said it was ‘just HIPAA stuff’” “Brochure I was given was very heteronormative and white-oriented” “Disability topics were the only ones not discussed” “All staff respected my pronouns but none told me their’s” “They didn’t ask [for my pronouns], but they did use my correct pronouns — they also had a spot on the paperwork for pronouns”
MOASH.ORG
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SHADES OF PINK FOUNDATION
Helping Breast Cancer Patients Focus on Recovery Through Financial Assistance BY DEB SILVERMAN, VICE PRESIDENT, SHADES OF PINK FOUNDATION
About 8,700 Michiganders will be diagnosed with breast cancer this year. Some 2,400 breast cancer patients in Michigan lose their jobs every year due to time off for treatment and recovery while the average cancer patient pays $1,500/month out-of-pocket for breast cancer care, even with insurance. These patients experience “financial toxicity,” a term created by Duke University researchers in 1983 to describe the financial side effects of cancer treatment. When these patients are the most vulnerable from the disease many are also dealt a catastrophic financial blow. Shades of Pink Foundation, a Southeast Michigan-based nonprofit is there to provide necessary financial assistance. Founded in 2005, Shades of Pink Foundation (SOPF) is on a mission to address the financial toxicity that often comes as an additional life-altering complication of a breast cancer diagnosis. SOPF has served hundreds of families in Southeast Michigan and distributed more than $2 million dollars in grants to clients in need while working to keep overhead expenses low. The Foundation is led by an all-volunteer working board of directors and two paid positions, a professional executive director and a part-time assistant who processes client grant applications.
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Shades of Pink Foundation offers temporary financial assistance to cover household expenses including insurance premiums, transportation, childcare, utility bills and other essentials of daily life. Funding is based on need and eligibility, not on income. Applications are submitted most often with the assistance of a hospital social worker and are reviewed by an SOPF committee. The application review can occur as quickly as 24-48 hours. Grants generally average between $1,000 and $3,000 and are paid directly to the creditor. The applicant’s financial distress must be a direct result of a breast cancer diagnosis. Each SOPF client has a unique story about their breast cancer journey and how Shades of Pink Foundation has helped them through tough times. One recent client, a single parent of three teenagers, lost her job after using all her vacation time and sick leave. With additional issues plaguing her journey, she found herself in a financial crisis,
SHADES OF PINK FOUNDATION
Shades of Pink Foundation offers temporary financial assistance to cover household expenses including insurance premiums, transportation, childcare, utility bills and other essentials of daily life. in debt, and with her utilities turned off. SOPF provided the financial support to pay the utility bills and cover a mortgage payment. Strength, courage, and determination brought her through the crisis and today she and her family are doing well. Looking forward, the SOPF board is working to implement a strategic plan that will put the organization on a trajectory to serve even more local breast cancer patients. The COVID-19 pandemic has made that task even more complicated. National statistics, and the experience of the medical professionals on the board, have found that fears about contracting COVID-19 have caused many to put off cancer screenings. This has resulted in delayed diagnoses, more advanced cancers, higher costs for additional testing, and longer courses of treatment. In addition, a 2020 American Cancer Society Action Network survey found that nearly 50 percent of cancer patients and survivors had a change in their financial situation due to COVID that affected their ability to pay for health care. Nearly a third of respondents were worried about their ability to afford basic household expenses. In a typical year, about 75 percent of Shades of Pink Foundation’s clients are gainfully employed at the time
of their diagnosis. By the time they apply for assistance that number drops to 25 percent — a 200 percent increase in the level of unemployment. These numbers are significantly worse in every measurable way as a result of COVID-19. The combined impact of higher healthcare costs and lower employment rates is that the need for financial assistance is greater than ever.
Through the generous support of individuals, organizations, and corporations in our community, SOPF is helping Michigan patients and their families navigate the high cost of a breast cancer diagnosis so they can focus on recovery.
Information on how to request assistance, donate, or become a sponsor or volunteer can be found at SHADESOFPINKFOUNDATION.ORG.
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THE ARTHRITIS FOUNDATION
Changing the Trajectory of Arthritis and Chronic Pain
BY SARAH SCRANTON, EXECUTIVE DIRECTOR, ARTHRITIS FOUNDATION
The Arthritis Foundation is fighting for all people who live with arthritis. As a “Champion of Yes,” it is the Arthritis Foundation’s mission to turn the obstacles arthritis causes into opportunities. The Arthritis Foundation champions life-changing solutions and medical advancements, and it also provides ways for people to connect, break down barriers in health care and join the fight for a cure — uniting hearts, minds and resources to change the future of arthritis.
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What needs to be done? The data shows that the gaps in access to and quality of care across income and education levels need to be closed, and ethnic and racial barriers need to be broken down. The Arthritis Foundation is working on capturing a diversity of experiences to help make that possible. The Foundation urges patients to continue taking the Live Yes! INSIGHTS assessment so that together, with policy makers, scientists and community leaders, they can shape a better future for all people with arthritis.
More than 54 million adults in the U.S. have been doctordiagnosed with arthritis. So have nearly 300,000 children. Many millions more battle arthritis symptoms but haven’t been officially diagnosed. Arthritis is the most common cause of disability in America, and chronic pain is a fact of life for people living with arthritis. Patient-report data shows that pain interferes with their day-to-day activities, their work, and their ability to socialize. It’s loud and clear: arthritis pain is pervasive and impacts nearly every aspect of a person’s life. The Arthritis Foundation encourages arthritis patients to take control of their pain with resources and services. From the Vim app, to support groups, to expert webinars, the Foundation helps patients conquer their pain and live their best possible lives.
Responding to the collected data, in 2021 the Foundation launched a three-year initiative focused on fighting the biggest problem of the arthritis community: pain. While pain is always a focus of the Foundation, this special initiative will lay the groundwork for better research, increased funding and stronger connections with the arthritis community. Part of the initiative includes the launch of the Vim app, to help give people with arthritis more power over their pain. Vim arms users with personalized pain management strategies and serves as a pocket-friendly way of tracking pain to help facilitate conversations with healthcare providers. The all-in-one app is also a master motivator — encouraging people to set attainable movement goals and rewarding them for their wins. And Vim thrives on community: users are supported by a network of other people facing similar challenges.
To change the trajectory of arthritis and the impact of chronic pain, action must be taken that is grounded in reallife experiences and challenges. That’s why the Arthritis Foundation launched Live Yes! INSIGHTS in 2018, an ongoing initiative to collect much needed data from patients. It’s one of the largest patient-reported outcomes (PRO) studies in the United States and the most extensive patient-centered effort we’ve led in over 70 years.
In the quest to find a cure, the Arthritis Foundation has invested more than $500M in arthritis research over seven years — much in the form of groundbreaking research grants and fellowships — bringing the cure closer each year. The Foundation is speeding up research in OA, which affects more than 30M Americans, and participates in a clinical trial network that is a component of the US FDA’s process to test new medical approaches and treatments.
MICHBIO | michbio.org
THE ARTHRITIS FOUNDATION
There are many ways you can join this community of champions — each of them touching the lives of individuals living with arthritis. Your donations help support cutting— edge research and resources for patients as the fight for better treatment, and ultimately, a cure continues. There are other ways that you can get involved without making a gift. Sharing your experience with arthritis, or the story someone you love, can better inform advocacy work to address key policy issues and break down barriers to care. Or join the Arthritis Foundation army of over 150,000 Advocates and Ambassadors to make real change on Capitol Hill and at your state level.
To join the fight to cure arthritis, visit ARTHRITIS.ORG
BIOMATTERS | PATIENT ADVOCACY | WINTER 2022
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SICKLE CELL DISEASE ASSOCIATION OF AMERICA, MICHIGAN CHAPTER
Identifying and Supporting Sickle Cell Patients in the State Since 1971
BY ALISHA BROWN, MARKETING AND COMMUNICATIONS DIRECTOR, MICHBIO BASED ON INFORMATION PROVIDED BY THE SICKLE CELL DISEASE ASSOCIATION OF AMERICA, MICHIGAN CHAPTER
For more than 50 years, the Michigan Chapter of the Sickle Cell Disease Association of America (SCDAAMI) has been supporting the sickle cell community. Founded in 1971 by Dr. Charles Whitten, SCDAAMI is focused on maximizing the quality of life for individuals living with sickle cell disease (SCD), helping individuals who are at risk for having a child with sickle cell disease make informed family planning decisions, and providing education and testing for the general public. Sickle cell disease is the most common heritable blood disorder in the United States affecting approximately 100,000 Americans. The disease, while complex, has one dominant characteristic — irregularly shaped red blood cells. In individuals who are not afflicted with SCD, red blood cells are disc shaped and easily move through blood vessels to deliver oxygen to the body. In individuals with SCD, red blood cells are crescent or “sickle” shaped. This sickle shape results in inefficient movement through the body — sickle cells stick together and can block blood flow — which significantly impacts oxygen delivery. In addition, these cells are fragile and break down easily in the body causing anemia.
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Sickle cell disease presents as severe pain in any part of the body where blood flow is restricted, as well as difficulty in fighting infections, anemia, increased risk of stroke, and long-term organ damage that impacts lifespan, among other complications. SCDAAMI has six community health workers placed strategically throughout the state in the areas with the highest rates of SCD — Detroit/Ann Arbor, Lansing/Jackson, Flint/Saginaw, Benton Harbor/Kalamazoo, and Grand Rapids/ Muskegon. These community health workers provide services reflecting the specific needs of individuals with SCD — including patient and family education, help navigating healthcare systems, assistance with IEP’s and 504 plans, career counseling, and more. In addition to providing services for existing patients, the SCDAAMI is an essential part in identifying newborns who have inherited either sickle cell trait or the disease. As a genetic condition, SCD can be identified through newborn hemoglobin screenings which allows health care providers to begin counseling patient families and providing care immediately. To that end, since the inception of the Michigan Newborn Screening Program in 1987, the SCDAAMI has served as Michigan’s Hemoglobinopathy Coordinating Center and has an extensive history of
SICKLE CELL DISEASE ASSOCIATION OF AMERICA
collaborating with the Michigan Department of Health and Human Services (MDHHS), and other regional and national partners. SCDAAMI’s Medical Director, Newborn Screening Assistant and Patient Advocates across the state are responsible for coordinating confirmatory testing, assisting with initiating, and monitoring life-saving penicillin prophylaxis, providing family education and identifying local hematologists for ongoing disease management.
In the past fiscal year, 56 infants in Michigan were confirmed to have sickle cell disease, eight infants were confirmed to have other blood diseases, 1787 infants were identified to have sickle cell trait and 645 infants were identified as carriers of other hemoglobin traits.
In addition to early identification of sickle cell patients, this testing also aids the SCDAAMI in its mission to support sickle cell carriers in their family planning efforts — without the screening they may not find out they are carriers of sickle cell trait until they have a child born with the disease. Having this information throughout their lives gives carriers the opportunity to become educated on its potential implications. Moreover, the identification of other blood disorders and genetic conditions through newborn testing significantly impacts the care of those patients and access to healthcare services.
Learn more about Sickle Cell Disease or the Sickle Cell Disease Association of America at SCDAAMI.ORG.
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BRISTOL MYERS SQUIBB
Pioneering New Medicines with a Human Touch
Bristol Myers Squibb is inspired by a single vision —transforming patients’ lives through science. They are in the business of breakthroughs.
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The company works to create lifesaving, innovative medicines — the kind that reshape patients’ lives — and they are focused on discovering, developing and delivering these breakthroughs to help patients prevail over serious diseases. To accomplish this, Bristol Myers Squibb combines the agility of a biotech with the reach and resources of an established pharmaceutical company to create a global leading biopharma company. In oncology, hematology, immunology and cardiovascular disease — and through one of the most diverse and promising pipelines in the industry — the company focuses on innovations that drive meaningful change. Their symbol, the hand, is a simple, universal expression of healing,
and of giving and receiving care. It is a representation of humanity, and of the personal touch brought by Bristol Myers Squibb employees to their work and to every treatment they pioneer. The brand fully embodies their vision and embraces their commitment to compassionate science and putting patients and people first. Bristol Myers Squibb understands that a commitment to putting people first extends beyond their laboratories to patient organizations and legislative halls. The company supports some of its patient advocacy partners with a training, the “Advocacy 101” program, that is an unbranded presentation providing an overview of everything a grassroots effort entails from start to
BRISTOL MYERS SQUIBB
finish. Individuals and organizations are given the tools and knowledge to navigate through the political process at legislative and regulatory levels. THE PROGRAM HELPS STRATEGIZE ADVOCACY EFFORTS FOR ORGANIZATIONS AND VOLUNTEERS THROUGH: 1. A basic understanding of advocacy; 2. Understanding the process of engaging with elected officials and other advocates to communicate a message; and 3. Developing strategies to grow and celebrate successes of the advocacy organization. Overall, the “Advocacy 101” program has been an excellent resource for any individual or organization looking to make their voices heard and ultimately impact the policy landscape. Bristol Myers Squibb is proud to offer this resource to advocacy partners. Additionally, Bristol Myers Squibb is engaged on all sorts of pro-patient policies, of which price and access have taken center stage recently. The company takes great care to price its medicines based on the value they deliver, the scientific innovation they represent, the investment necessary to develop them, and the economic factors that impact healthcare systems’ capacity to provide appropriate, rapid, and sustainable access to patients. Bristol Myers Squibb believes it is important to consider the total cost of care and the many factors that go into the price of a treatment and that pricing should be put in the context of the value, or benefit, the medicine delivers to patients, healthcare systems and society overall.
transformational medicines that improve upon the current standard of care, and benefit to patients, society, and payers. They are actively engaged in the global dialogue to address out-of-pocket care costs for life-saving medicines and the increased burden those costs may place on patients, families, and caregivers compared to other health care services. Identifying solutions that provide innovative medicines to patients while helping to reduce the overall cost of care to society across the healthcare landscape is a shared goal of the biopharmaceutical industry.
Bristol Myers Squibb works to ensure policies that support and reward the investment in transformation medicines, while providing access to patients, are at the center of the healthcare reform conversation, and is proud to work with patient advocates to advance the pro-patient, pro-access, policy environment.
BMS.COM
They also that believe patients who can benefit from their medicines should have access to them. In their view, holistic market-based reforms to healthcare infrastructure are the best way to lower costs and, to that end, Bristol Myers Squibb supports policies that reduce unnecessary regulations, promote competition, modernize the drug discovery and development process, and enable manufacturers and payers to negotiate innovative and flexible ways to pay for medicines. Bristol Myers Squibb, along with other innovative biopharma companies, focuses on developing
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SUSAN G. KOMEN
It Takes Collaboration to Save Lives from Metastatic Breast Cancer
SEAN TUFFNELL, COMMUNICATIONS DIRECTOR AND JAYE SCIULLO, EXECUTIVE DIRECTOR, GREATER DETROIT, SUSAN G. KOMEN CONTRIBUTED TO THIS ARTICLE
This year, more than 9,000 women in Michigan will hear the words that no woman wants to hear — you have breast cancer. And while most will receive treatment for early— stage breast cancer and go on to hear the words every person with cancer wants to hear — “you no longer have any evidence of cancer” — some won’t. Many will find their breast cancer has spread to other areas of the body, such as their liver, lungs, bones or brain. This is called metastatic breast cancer (MBC), or stage 4, and it is responsible for most of the nation’s estimated 44,000 breast cancer deaths each year. People with metastatic disease are living longer thanks to research that has increased understanding of the disease and has led to new and more effective treatments. In the 1970s, for example, only about 10 percent of people survived five years after a diagnosis of MBC, now the 5-year relative survival rate is 29 percent. That means for the 168,000 people estimated to be living with MBC in the U.S., research is needed to ensure there is always another treatment available after the one they are on fails to stop the cancer from progressing. Research is what gives them hope. Michigan’s Trish Devine, a soft-spoken yet fierce advocate
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who died earlier this year from MBC, believed research held the key to creating a better future for those who came after her. She cared deeply about the need to focus money on ways to accelerate discovery for MBC. One way Susan G. Komen is working to accelerate discovery is by encouraging researchers to step out of the confines of their own institutions and to collaborate with others who are working on similar areas of study, to take advantage of their combined expertise and knowledge. For example, Komen recently awarded three new grants — for a total of $1.5 million — to research teams that unite scientists from rival universities at the Duke Cancer Institute and the University of North Carolina Lineberger Comprehensive Cancer Center. The initiative, called the Susan G. Komen Metastatic Breast Cancer Collaborative Research Initiative, is an innovative, first-of-its-kind effort to pair researchers from each of the organizations to work together to address significant gaps in the knowledge about MBC and advance patient care and improve patient outcomes. These three grants fall under Komen’s two primary research priorities, which are to find new ways to prevent, detect and treat metastatic and aggressive breast cancers, as well as to understand and overcome the inequities that lead certain people and communities to have higher rates of mortality from breast cancer.
SUSAN G. KOMEN
THIS YEAR
9,000 WOMEN IN MICHIGAN WILL BE DIAGNOSED WITH BREAST CANCER
One research team will investigate how the ancestry of different populations impacts the immune response to MBC. The team seeks to determine if these differences cause breast cancer cells to grow and spread more quickly in people of African descent and contribute to higher metastasis and death rates among Black women. Improved understanding of these underlying molecular mechanisms may lead the way to better treatments and outcomes for Black women. Another team is evaluating how life stress contributes to higher metastasis rates and worse breast cancer outcomes in Black women when compared to white women. They aim to develop specific interventions to reduce metastasis that consider multiple factors from basic biology to societal factors in order to improve outcomes for Black women. The final team is working to develop a personalized antitumor vaccine for people with advanced triple-negative breast cancer that would mobilize the body’s immune system (T cells) to shut down tumor growth and metastasis. Yet we know research alone will not be enough to save lives. People must be able to access life-saving treatments. This is why we work to remove barriers to care, including advocacy to change public policies. The heartbreaking truth is that new therapies come with high price tags, creating significant financial hardships for people with MBC and their families. No one with breast cancer should live in fear of financial ruin to obtain the care they need.
This is where government policies come in. Many people living with MBC, especially those newly diagnosed with the disease, have severe symptoms that often make it difficult to work. Without income, many must rely on government support through programs like Medicare and Social Security Disability Insurance (SSDI). Yet due to current law that requires lengthy waiting periods, individuals with MBC may never receive the SSDI and Medicare benefits they are eligible for. The good news is there is a bill before Congress, the Metastatic Breast Cancer Access to Care Act, which seeks to waive these waiting periods, accelerating access to care and improving quality of life for people living with MBC.
Saving lives from breast cancer is going to take all of us, investing in research and working to remove barriers so people can get the care they need.
KOMEN.ORG
BIOMATTERS | PATIENT ADVOCACY | WINTER 2022
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AMERICAN CHRONIC PAIN ASSOCIATION
Migraines of Michigan
BY SCOTT FARMER, MBA, CHIEF OPERATIONS OFFICER (COO) , AMERICAN CHRONIC PAIN ASSOCIATION (ACPA)
Self-managed for years with little success, Hope noticed a strong connection between stress and headaches — as her stress increased, so did the frequency and severity of her headaches. As a result, the term “Tension Headache” became her favorite self-diagnosis — ten years would go by before she was officially diagnosed with Migraine. Hope Farmer was a thriving high school student, active in many extracurricular activities. When she suddenly lost her father on her eighteenth birthday, her life changed drastically. Over a period of ten years she went from having the occasional headache, to having severe headaches almost every day, accompanied by anxiety, depression, stomach issues, and sleep problems. Her quality of life diminished. Major stressors continued, which made the burden of her health problems unbearable. Headaches became her motivating factor to schedule a healthcare visit. Hope’s first headache discussion with a healthcare provider was challenging. Hope did not document her headaches, nor the specific symptoms that accompanied them. She became flustered and discourage as she was unable to communicate her problems within the small window of time of her healthcare visit.
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MICHBIO | michbio.org
Desperate for answers, Hope found the American Chronic Pain Association. There she utilized a resource called MigrainePro that helps facilitate communication between the person with Migraine and the healthcare provider. She printed out a communication guide where she tracked her headaches for three months along with the other symptoms. AT HOPE’S NEXT VISIT SHE WAS PREPARED. HER HEALTHCARE PROVIDER ASKED HER THE FOLLOWING QUESTIONS: • How many days of headache do you have per month? • Do your headaches tend to be on one side of your head? • Do the headaches have a throbbing or pulsating feeling? • Is the headache pain moderate to severe? • Does physical activity make the headache pain worse? • Do you experience sensitivity to light or noise? • Do you get nauseous or vomit during your headaches? • Lastly, do your headaches last 4 to 72 hours when not treated or treatment doesn’t work?
AMERICAN CHRONIC PAIN ASSOCIATION
With Hope’s answers to these questions, her healthcare provider was able to confidently diagnose her with migraine. In fact, with over 15 headache days per month, Hope had Chronic Migraine. Utilizing the communication guide, Hope and her healthcare provider formed a complete migraine management plan. THE PLAN INCLUDED THE FOLLOWING: • Acute Medication (treatment taken when a headache first comes on) • Preventive Medication (treatment taken on a regular basis to reduce migraine attacks) • Behavioral Therapy (deep breathing and relaxation techniques) • Diet (reduce sugars), Sleep (regular 7-9 hours), and Exercise (daily walk) • Life Balance (minimizing negative factors and increasing positive factors) Hope is now practically migraine free. However, when she fails to adhere to her migraine management plan, a migraine always follows.
Follow Hope Farmer at FACEBOOK.COM/HOPE.FARMER.965
HOPE’S STORY CAN BE A GUIDE TO THOSE STRUGGLING WITH HEADACHES: • Don’t wait to seek care — self-management can lead to Chronic Migraine. • Seek quality healthcare and make an appointment to discuss your headaches. • It is difficult for a healthcare professional to make a diagnosis without solid evidence of the impact headaches are having — print off a communication guide and be prepared. • Advocate for yourself and ask for a COMPLETE MIGRAINE MANAGEMENT PLAN. The mission of the American Chronic Pain Association is to facilitate peer support and education for individuals with chronic pain and their families so that these individuals may live more fully despite their pain.
The Association strives to raise awareness among the health care community, policymakers, and the public about issues of living with chronic pain.
Please make your mind up to get well and join us at THEACPA.ORG BIOMATTERS | PATIENT ADVOCACY | WINTER 2022
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BLOOD CANCER FOUNDATION OF MICHIGAN
SUPPORTING FAMILIES THROUGH CANCER’S ISOLATION, CHAOS AND HEARTBREAK BY STACEY ANDERSON, DIRECTOR OF DEVELOPMENT, THE BLOOD CANCER FOUNDATION OF MICHIGAN
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MICHBIO | michbio.org
BLOOD CANCER FOUNDATION OF MICHIGAN
BCFM provides comprehensive support to not only assist with the financial burden of a blood cancer diagnosis, but also ensure patients and families have a community with which to grow and cope.
The Blood Cancer Foundation of Michigan (BCFM) is a statewide non-profit organization whose mission is to ensure the emotional, social and financial stability of Michigan patients and families as they navigate their blood cancer journey. Founded nearly 70 years ago by families who experienced the isolation, chaos and heartbreak that comes with a blood cancer diagnosis, BCFM (formally Children’s Leukemia Foundation) remains a steadfast resource for anyone in Michigan experiencing blood cancer. The MSW (Masters of Social Work) Patient Support Specialists of BCFM work directly with both patients and families impacted by the disease to create a comprehensive and sustainable plan — providing stability, guidance and support throughout the process — allowing these patients and families to focus on healing. There are nearly 200 subtypes of blood cancers and blood disorders that are supported by BCFM and patients of all ages are eligible for support. Many significant strides have been made in the management of blood cancers, including new chemotherapy drugs and immunotherapies. While these advances mean patients are feeling more optimistic about their treatment options, the changes also lead to increased confusion and anxiety. Blood cancers remain some of the costliest cancers to treat and many patients require lifelong treatment, including extensive transportation, medication and emotional costs. The immediate implications of the treatment also can impede a household’s ability to remain employed or within a community program (such as school, day-care, etc.), causing chaotic fallout around critical daily routines and needs. BCFM is here to address these stressors and barriers
to treatment through two financial assistance programs, including direct need and emergency cost assistance, as well as social and emotional support programs. BCFM provides comprehensive support to not only assist with the financial burden of a blood cancer diagnosis, but also ensure patients and families have a community with which to grow and cope. Additionally, BCFM offers emotional support focused on addressing the behavioral and the emotional needs of a patient and their family that accompanies a diagnosis. These social and emotional programs provide everything from community outings and parties, to providing holiday toys to families, to expert led support groups.
Through partnerships with area hospital social workers, advocacy channels and traditional marketing and outreach, Michigan patients of any background have access to be enrolled in BCFM services from diagnosis to remission and beyond. The board, staff, volunteers and BCFM community are proud to work towards ensuring that nobody has to walk their blood cancer journey alone.
BLOODCANCERFOUNDATIONMI.ORG
BIOMATTERS | PATIENT ADVOCACY | WINTER 2022
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MICHIGAN OVARIAN CANCER ALLIANCE
OVARIAN CANCER: How Much Do You Know?
BY MEGAN NEUBAUER, PROGRAM MANAGER, MICHIGAN OVARIAN CANCER ALLIANCE
Significant medical advancements have been made with respect to various types of cancer— related care and diagnostics, but when it comes to ovarian cancer, substantial research is still needed. Ovarian cancer is the 11th most prevalent cancer in women, however, it is the fifth most common cancer-related cause of death for women.1 The discrepancy between ovarian cancer prevalence and mortality rates speaks to the need for greater attention, research, and interventions for the thousands impacted by a new diagnosis across the country each year. In Michigan approximately 600-700 individuals are diagnosed each year. Only about 15% of diagnoses are made during the earliest stages, when treatment outcomes are best. Unlike many other forms of cancer, there is currently no early detection test that can be used to screen for ovarian cancer. Instead, patients and providers often have to rely on awareness of the most common symptoms and individual risk factors to promote earlier detection and access to treatment; however, these symptoms can often be attributed to other conditions. The Michigan Ovarian Cancer Alliance (MIOCA) is committed to changing the narrative about ovarian cancer.
1 Ovarian Cancer Research Alliance, 2021
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MICHBIO | michbio.org
Founded in 2011, MIOCA strives to save lives by promoting the early detection of ovarian cancer and improved treatment outcomes. MIOCA raises awareness of ovarian cancer, provides resources and support to survivors and their families, advocates both locally and federally, educates Michigan communities, and funds innovative ovarian cancer research. For so many at MIOCA, the mission and search for earlier detection is deeply personal. “I was shocked,” says Kim Scartelli, MIOCA Board Treasurer, “when I was diagnosed with Stage 3 Ovarian Cancer in 2016 when severe abdominal pain sent me to the ER. How was it already stage 3 when I had been a faithful attendee of doctor’s visits? I had an annual exam with my OBGYN, annual mammograms and saw my primary doctor like clockwork once a year. Every blood test was normal, pelvic exam was fine and my pap tests were normal.” She continued, “I learned that I wasn’t alone and that it is typical for most women being diagnosed with ovarian cancer to be diagnosed at stages 3 and 4 because there is no test to detect the disease in early stages. Those ‘lucky’ enough to be diagnosed at stage 1 and 2 have a greater chance of survival. My hope for future generations is that we can save more lives with a way to detect ovarian cancer in early stages to save the lives of more women.”
MICHIGAN OVARIAN CANCER ALLIANCE
“I lost my mom to ovarian cancer in 2010,” says Suzi Peterson Steward, MIOCA Board President. “She knew nothing about ovarian cancer and her doctors never thought to check for it with her symptoms until it was too late and she was diagnosed as Stage 4. She only lived another year. My family and I have dedicated time every year to advocate for early detection diagnostics, so that someday no one has to be blindsided with a late diagnosis.” The impact of ovarian cancer is far reaching and affects people throughout our communities — not only patients but also their families, co-workers, and friends. Working toward earlier detection would be a benefit for all and a needed step in medical advancement.
Ultimately, MIOCA is striving for a time where people are diagnosed and have access to effective treatment earlier. We are committed to making this happen. However, the needed medical advancement will not come without increased attention to these matters and collaborative efforts within the medical community. MIOCA is committed to working in partnership with all connected to ensure that this changes.
MIOCA.ORG
BIOMATTERS | PATIENT ADVOCACY | WINTER 2022
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THE DISRUPTORS WHAT ARE THE BIG THINKERS DOING TO CHALLENGE CONVENTIONAL DRUG DEVELOPMENT?
MEET SANATH Sanath Ramesh was determined to track down the resources needed to repurpose a drug for his son Raghav’s ultra-rare disease. This determination led him to apply his experiences as a software engineer and empower the rare disease community with his collaborative platform, the OpenTreatments Foundation. Find out how his software platform is now giving hope to other rare disease patients and how Charles River’s partnership is helping more patients get to treatment.
Watch Sanath’s story at
MeetTheDisruptors.com
every step of the way.
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