IT TAKES MORE THAN MEDICINE
2021 Trot to Clot Walk/Run participants help raise money to support Hemophilia of
Georgia’s Camp Wannaklot.
IT TAKES MORE THAN MEDICINE HEMOPHILIA
OF GEORGIA SINCE 1973
Copyright © 2023 by Hemophilia of Georgia. All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without permission in writing from:
8607 Roberts Drive, Suite 150
Sandy Springs, Georgia 30350
Chief Executive Officer
Edith A. Rosato, R.Ph., IOM
Project Director and Editor
Coleen Lou
Book Development Bookhouse Group, Inc. www.bookhouse.net
Editorial Director Rob Levin
Writer Amy Meadows
Book Design
Rick Korab, Renée Peyton
Production and Archival Management
Renée Peyton
Proofreader Stacy Moser
Printed in South Korea
Participants in the 2023 Trot to Clot proudly pose with their medals for completing the 5K in support of Hemophilia of Georgia’s Camp Wannaklot.
Members of Hemophilia of Georgia’s leadership team celebrate the organization being named a 2022 Top Workplace by the Atlanta Journal-Constitution.
FOREWORD
As a career pharmacist and the Chief Executive Officer of Hemophilia of Georgia, I am honored to be able to provide the foreword to our fiftieth anniversary commemorative book, It Takes More Than Medicine—Hemophilia of Georgia Since 1973.
Even though I graduated with a degree in pharmacy many years ago, I have worked for a multitude of organizations throughout my healthcare career. I have worked side-by-side with some very intelligent and talented individuals. Though each of them had different personalities, interests, and passions, one thing was constant: they all cared deeply about making a difference in the lives of the patients they served.
This is what our fiftieth anniversary book is about. It all started in 1973, when four families came together to advocate for individuals that had hemophilia. Each family knew all too well the challenges of caring for someone in their family that had hemophilia. Through their perseverance, passion, caring, and advocacy, they were able to bring attention to the needs of the community and the challenges that individuals with bleeding disorders and their families face on a daily basis. This was the beginning of a transformation.
This transformation of the lives of individuals with a bleeding disorder and their families continues, even today. We find new ways to support our community, through the clinical services, family support, education, and advocacy programs that we provide. This only happens because of the committed and passionate community that exists and the dedication and drive toward making a difference, just as the four families had envisioned.
Hemophilia of Georgia exists so that people affected by bleeding disorders can live as normally and productively as possible. This is our mission, our purpose in life.
Our history is rich. It is a unique story of courage and passion. We are very proud of our legacy, how far we have come in the journey since our founding, and we are especially proud of where we are today. Thank you to all the people who were involved throughout the last fifty years as Hemophilia of Georgia grew and evolved into a world-renowned organization for individuals living with a bleeding disorder.
Edith A. Rosato
Edith A. Rosato, R.Ph., IOM Chief Executive Officer
PROLOGUE
Whatever It Takes
Kim Williams, senior director of client engagement for Hemophilia of Georgia (HoG), received an unusual item in the mail one day. At the time, she was the director of camps and client events for the organization, and she had never received anything like what she held in her hand. It was a piece of pink construction paper folded over into the shape of an envelope. Masking tape held the handmade letter together, and the organization’s address was carefully written across the front. There was no postage, but the post office delivered it anyway. As Williams opened the handcrafted parcel, she discovered a completed reservation form for Camp Wannaklot, HoG’s weeklong summer camp for children living with a bleeding disorder.
“I started crying,” Williams recalls. “It meant so much for this child to come to camp that he figured out how to send the form to us. It was past the deadline to sign up for camp, but he wanted it so badly. And we moved mountains to get him there. He put forth the effort, and we were going to put forth the same amount of effort.”
That kind of compassion and commitment has been the hallmark of Hemophilia of Georgia since its founding fifty years ago. Offering comprehensive healthcare services and a variety of unique programs for people of all ages with hemophilia, von Willebrand disease, and other bleeding disorders, HoG has become a beacon of hope for patients and their families across Georgia and beyond. From nursing, pharmacy, and social work services to educational programs, advocacy efforts, research initiatives, and more, the organization aims to bring an unprecedented level of support to people in the bleeding disorder community while continuously providing funding for research to find a cure.
This is the story of the pioneering efforts of Hemophilia of Georgia, an organization dedicated to helping every individual with a bleeding disorder not just live a normal life but live the full and productive life they have always imagined.
IT TAKES MORE THAN MEDICINE HEMOPHILIA OF GEORGIA SINCE 1973
CHAPTER ONE
Strive to Thrive
Serving Georgia’s Bleeding Disorder Community
In early 1973, four families in Georgia gathered around a coffee table to have a serious conversation. They each had a son with hemophilia, and they wanted to share their concerns about the untenable price of a newly developed clotting factor concentrate that had been introduced for patients living with the condition.
The Mitchell, Acree, Thomas, and Harris families recognized that paying several thousand dollars per year for the new medication would be difficult not only
for them, but also for every family facing the challenges associated with hemophilia. They decided to band together to petition the state for financial assistance that could be applied to the cost of the life-saving treatment, which was designed to replace a hemophilia patient’s missing blood clotting factor so the blood could clot properly. But they needed support.
“Being a part of the Hemophilia of Georgia (HoG) family helps to ease my worries. HoG has always been there for me and my family.”
—Lauren L., client
The group turned to the Georgia Chapter of the National Hemophilia Foundation (NHF), which was established in the late 1960s. The chapter connected the families with Dr. Larry Lutcher, then a professor in the hematology and oncology department at the Medical College of Georgia in Augusta and a physician who was devoted to serving patients living with hemophilia and other bleeding disorders. Lutcher, who at one time cared for the country’s longest living hemophilia patient, approached the Georgia General Assembly on behalf of the families to request funding to help pay for the clotting factor. The effort resulted in the NHF Georgia Chapter receiving a one hundred-thousand-dollar grant to improve financial access to the medication for families across the state, as well as to develop specialized services for those living with hemophilia, von Willebrand disease, and other bleeding disorders.
With that funding, Hemophilia of Georgia, Inc. was founded on August 17, 1973, as a small separate chapter of the National Hemophilia Foundation. Launched with only two employees—a medically trained program director and a secretary—under the guidance of a board of directors appointed by the NHF Georgia Chapter, HoG officially began as a purchasing cooperative that kept the cost of the clotting factor low while
producing a fiscal surplus to help secure medication for those who could not afford it.
“We were very fortunate in the early 1970s to have those families in the metro Atlanta area who not only wanted to bring attention to the disorder, but also advocate for people who didn’t have health insurance or could not access their medication,” says Edith A. Rosato, chief executive officer of HoG since 2019 and a licensed pharmacist. “That was the seed that started HoG. It was this community in Georgia that came together to build Hemophilia of Georgia from the ground up.”
Over the years, the organization has grown exponentially in its scope, becoming a 501(c)3 nonprofit entity in June of 1976 and merging with the NHF Georgia Chapter in 1997. Serving more than two thousand individuals annually by the time it turned fifty, HoG transformed itself into an internationally recognized nonprofit and the premier provider of programs and services for those in the bleeding disorder community throughout Georgia and beyond. It did that by taking an innovative, comprehensive approach to care that focuses on two key elements: removing barriers and empowering patients.
An Unprecedented Model
There are many challenges associated with having a bleeding disorder, from finding the right physicians close to home to provide evaluations and create effective treatment plans to understanding the evolving nature of the life-saving medications available and managing the financial aspects of having a chronic, cradle-to-grave disease. There are also a variety of social considerations, with schoolchildren often being treated differently because of educators’ lack of understanding about bleeding disorders and the uncertainty and trepidation that can come with transitioning from being a child with hemophilia to being an adult with hemophilia. Along the way, challenges typically come in the form of barriers that keep patients from living what others would consider to be normal lives.
“For us, it’s about addressing those barriers. That’s our goal: to reduce the barriers so people have access to the care they need and are able to afford it,” says Stephanie Matz, RN, BSN, vice president of clinical services. Kim Williams agrees, adding, “When we identify a barrier, we work really hard to move it out of the way. Everything we offer to our patients and their families is done with that in mind. There have been some major issues that we have identified, and we’ve had some big wins in addressing the barriers they face.”
The Medical Setting: Hemophilia Treatment Centers
When Trish Dominic was hired as executive director of HoG in 1984, patients in Georgia had access to one hemophilia treatment center (HTC), which opened a decade earlier as part of an agreement between HoG and the state Department of Human Resources and was located on the Augusta campus of the Medical College of Georgia. It was in this single location that patients from around the state could see physicians and nurses who specialized in hemophilia and other bleeding disorders, get an infusion of clotting factor when necessary, and speak to an entire team of ancillary medical professionals who understood those conditions and their co-morbidities, such as physical therapists, orthopedists, dentists, and gynecologists. The number of HTCs grew over the next several years— an effort spearheaded by Bill Acree, one of the founding fathers of HoG, who visited federally funded HTCs
“With
the support of Hemophilia of Georgia and the HTC at Emory, I have been able to totally transform the way that I manage hemophilia. Rather than trying to ignore it, I have learned to embrace it and to proactively treat myself prior to doing the activities that are very important to me . . .”
—Brad W., client
Medical College of Georgia, located in Augusta, Georgia.
around the country in the early 1980s to research best practices that could be applied to facilities in Georgia. In 1984, a pediatric clinic was added to the Medical College of Georgia; HTCs for adults and children launched at Emory University in Atlanta in 1988, and a pediatric clinic opened in Savannah in 2005. In 2021, seeing how the medical landscape had changed over time and in response to the COVID-19 pandemic, HoG opened a comprehensive telehealth clinic in Savannah, allowing adult patients to virtually visit with Augusta-based blood disorder specialists; a similar clinic
“My family is so grateful for the comprehensive care we receive from Hemophilia of Georgia that helps keeps my son happy and healthy! The nurses and social workers are always very kind and patient with him. “
opened its doors in Perry in 2023.
The concept of having these all-in-one medical facilities has always been part of HoG’s emphasis on providing individuals with a bleeding disorder access to high-quality comprehensive care. “Comprehensive care provides an opportunity to address every issue and challenge a patient may have related to their disorder,” Rosato notes. “We tend to think of it as treating the patient in a holistic way. The goal is to promote not only physical health, but also psychosocial well-being and quality of life. It’s the gold standard of care and it is one of the reasons why our tagline is ‘It takes more than medicine.’ ”
The leadership of HoG understood that having the opportunity to visit an HTC is particularly important considering the fact that bleeding disorders like hemophilia and von Willebrand disease are so rare. While hemophilia alone affects nearly forty thousand people in the United States,
—Anita, mother of Thorin, a young client
A Helping Handbook
In 1986, HoG hired Ruth Brown as an independent contractor to create a handbook for Georgians living with hemophilia, von Willebrand disease, and other bleeding disorders. She spent two years compiling The Hemophilia Handbook, a nearly four-hundred-page day-to-day guide providing tips and advice for managing bleeding disorders. It did not take long for the guide to go beyond Georgia’s borders and become a worldwide resource. As Vic McCarty notes, “It’s the hemophilia bible. It’s an amazing publication that talks about care, treatment, what to expect and not to expect, what a hemophilia treatment center will mean to your life, and how to maneuver through the hemophilia world. It’s a unique manual.”
Over the years, HoG received a number of grants and various funding to update and expand the guide, which is now known as The Hemophilia, von Willebrand Disease & Platelet Disorders Handbook and is available online as an invaluable resource for patients across the globe.
(Left) Campers enjoying a little camaraderie at Camp Wannaklot in 1988. (Right—clockwise) Campers from Camp Wannaklot in 2023 ready for a Party in the USA-themed week of fun, 2021 Family Camp participants enjoying paddleboats, runners at the 2023 Trot to Clot in 2023, and participants displaying their medals of completion at the 2023 Trot to Clot.
a majority of them males, hemophilia and von Willebrand disease together still represent a small percentage of the general population, and it can be difficult for patients to access doctors and ancillary medical professionals who specialize in this area. “Even in the metro area of Atlanta, outside of the hemophilia treatment center, a hematologist might not see many bleeding disorder patients. Many focus on clotting and oncology, so unless you specialize in bleeding, then you may not have any bleeding disorder patients,” Stephanie Matz reveals. “In some rural areas, even the hospitals are challenging, as some do not even carry factor medications. It’s a huge barrier. But our organization helps support and fund the main hemophilia treatment centers in Georgia.”
”I received incredible services from the pharmacy, who rushed factor orders and supplies as I continued to need more for managing bleeds. They very quickly processed preauthorizations as I changed products and got new prescriptions as my treatment plan changed.”
—Brad W., client
The Best Medicine: The Pharmacy
While most HTCs around the country typically operate as part of the larger hospital system, Georgia’s setup is quite unique. HoG works collaboratively with the Georgia HTCs to provide comprehensive clinical care for individuals with a bleeding disorder. Each year, the Georgia HTCs receive a financial grant that supports the operations of the clinic. This allows the HTCs to be more independent of the larger health system, allowing for added flexibility in providing patient care.
HoG’s participation in the federal government’s 340B program provides the ability to offer the grants. Prior to 1986, HoG acted as buying a cooperative, purchasing clotting factor from pharmaceutical manufacturers and distributing the medication through Georgia’s Central Supply Pharmacy, located just south of Atlanta. Under the direction of Trish Dominic, that all changed. In 1986, HoG established an in-house pharmacy.
“Through the years, we grew from a social service organization to include the pharmacy, which was created to help patients get direct access to the safe blood products that were used to treat hemophilia at that time,” explains Robert Gillespie, chief operating officer.
“I just want to thank all the nurses and staff at Hemophilia of Georgia. What they have done for me is beyond what I can say in words. I can’t thank them enough for everything they have done to help me to live a more normal and productive life!”
—Jimmy W., client
“When the 340B program came along, that enabled us to begin operating the pharmacy the way it does now, allowing us to buy medication from manufacturers at a lower cost.
Whatever revenue we make from our pharmacy sales can then be used to fund our many programs designed to help individuals with a bleeding disorder.”
Hemophilia of Georgia’s COO, Robert Gillespie, collaborates with long-time HoG nurse Penny Kumpf at a 2022 professionaldevelopment seminar.
In 1992, Congress created the 340B drug pricing program. The program’s goal was to provide greater access to affordable medications, especially for the low-income and underserved communities. Drug manufacturers were required to provide significant discounts on outpatient drugs to eligible healthcare providers serving these populations. In 1993, HoG was approved as a 340B and Medicaid provider. Pharmacist
Bob Ney was hired to oversee the facility. Before the end of the decade, the pharmacy staff evolved, with Ney being replaced by Lisa Loux. She was joined by pharmacy
“Jenny has been taking our pharmacy orders and answering our questions for many years. Jenny always makes sure everything is handled and taken care of exactly as it is supposed to be. She is so positive, informative, and helpful.”
—Charnee, mother of young client Isaiah
technician Connie Knorr in 1997, and pharmacist Leigh Carpenter was hired to replace Loux and oversee all pharmacy operations in 1998. From that point on and for several years, the pharmacy existed as a two-woman operation. Together, Knorr and Carpenter worked directly with patients who received prescriptions from the HTCs and chose to have them filled through HoG’s pharmacy. Carpenter later became vice president of pharmacy operations in 2020.
Over the years, the pharmacy evolved alongside the treatments for hemophilia and von Willebrand disease. For instance, prior to the mid-1980s, patients infused themselves with human plasma-based clotting factor; the product, however, became dangerous during the decade as the HIV epidemic emerged. Many hemophilia patients became infected with the virus, and the community suffered greatly. “Imagine that the medicine you’ve been given to save your life has now infected you,” Carpenter says. “But now, with recombinant products that are not made from human
blood, you don’t have to worry about that because there is no human protein in it. It is safer.”
For nearly two decades, the HoG pharmacy stored and distributed recombinant products to patients throughout the state; some patients used them only during a bleed, while others infused the medication prophylactically to keep their factor levels up on a daily basis. That model remains to this day. However, by 2017, another breakthrough brought Hemlibra, a subcutaneous injectable medication, to the market. “Hemlibra doesn’t replace a missing protein—it acts like a bridge over the missing proteins in your body,” Carpenter explains. “It works so well that many patients feel like they don’t have a bleeding disorder anymore. They can still have a breakthrough bleed and need to keep factor at home, but it’s so nice that these kids and adults can feel more normal.”
With all of the medication options available, Carpenter and the pharmacy team, which grew to ten people over the years, work tirelessly to manage the individualized treatment regimens for HoG’s patients, which collectively comprise nearly $7 million worth of inventory. “We count it vial for vial every Friday,” Carpenter notes. The pharmacy team also consistently works to ensure that it maintains the dual accreditation it earned from the Accreditation Commission for Health Care (ACHC) and the Utilization Review Accreditation Commission (URAC). What’s more, the team upgraded its services even further with the URAC accreditation, which opened the door to Rosato deciding to add medication therapy management (MTM) to the pharmacy’s repertoire. “We’ve enhanced our services immensely from twenty-five years ago to where we are today,” Carpenter says, noting that MTM gives pharmacists the opportunity to have detailed conversations with patients every month about their medications, treatment plans, refill requirements, quality of life issues, and barriers they are facing that could affect their overall health. She continues, “Even without the accreditation, we would want to do this because it’s about providing the best care.”
Under Contract
Hemophilia of Georgia’s pharmacy services do not only benefit patients across the state. According to Leigh Carpenter, vice president of pharmacy operations, the organization’s in-house specialty pharmacy actually serves as a contract pharmacy for several hemophilia treatment centers in Florida and one in Mississippi. What’s more, the pharmacy holds retail pharmacy licenses in a number of other surrounding states, including Alabama, Tennessee, Louisiana, Pennsylvania, Missouri, Illinois, North Carolina, and South Carolina. This allows the pharmacy to serve patients who may have originated their care in Georgia but have moved to other locations—often for college or new job opportunities—and want to maintain a connection with HoG’s facility.
“I had one child I knew since he was little. He got his factor here. He grew up and went to Northwestern University, and we shipped his factor to Illinois,” Carpenter recalls. “When he graduated, he moved to New York to work on Broadway—but he still wanted to use our pharmacy.” With no license required in New York, HoG was able to continue fulfilling his medication needs. “That’s the best part of my job,” she adds. “You meet these kids, and you watch them grow up, get jobs, and start having families of their own. It’s just so rewarding to be a part of their lives.”
A dedicated HoG volunteer gives a participation medal to a delighted young participant at the 2023 Trot to Clot.
Trot to Clot 5K Walk/Run
Ninety-seven percent of the revenue garnered from HoG’s specialty pharmacy goes towards the organization’s variety of programs, from outreach nursing and social work to Camp Wannaklot. However, a great deal of additional funding is needed annually not only to keep all of the programs running smoothly, but also to ensure that they continue to expand. That’s why, in 2010, Trish Dominic suggested hosting a fun run and walk event.
“I was hesitant at first because everybody was doing fun runs and walks,” says Vic McCarty, chief development officer. “But I did some research and realized that it was an event that our community could support. It wouldn’t require high-dollar sponsorships. At the time, people could pay twenty-five dollars to register and run with us.” Thus, the Trot to Clot 5K Walk/Run was born.
According to McCarty, the first event in 2010 was very casual, with participants wearing t-shirts donning a cartoon of a pig wearing sneakers and around $8,000 being raised. However, over the next decade, the annual event became more popular and more polished and is currently hosted at The Battery at Truist Park, complete with a DJ, activities, and more. It even serves as a Peachtree Road Race qualifier. The net proceeds from the Trot to Clot 5K event go to support programs such as Camp Wannaklot. In 2012, the event raised $43,000; by 2023, that number skyrocketed to over $102,000 thanks to the
generosity of the organization’s corporate partners and increased event participation.
“I’m very proud of Trot to Clot,” McCarty notes. “It’s really my baby. It’s so fun to see the community interact with each other. It’s a chance for the community to support each other, share stories, and develop their network. It’s a wonderful way to really engage our bleeding disorder community.”
A Major Medical Breakthrough: Gene Therapy
While HoG continues to support research to find a cure for hemophilia and other bleeding disorders, there have been scientific breakthroughs that make that ultimate goal seem possible. In fact, on November 22, 2022, the U.S. Food and Drug Administration approved the first gene therapy for those living with hemophilia B. According to Leigh Carpenter, vice president of pharmacy operations, the one-time treatment can raise factor levels to a point that will allow patients to eliminate or dramatically reduce the need for medication. However, the treatment does begin to wane after five to seven years, meaning that it is not a permanent cure. For now, it is the closest researchers have gotten to achieving a cure, and it motivates everyone in the bleeding disorder community to be positive about the medical breakthroughs that are sure to come in the future. Additionally, on June 29, 2023, a new gene therapy treatment for severe hemophilia A was approved to reduce bleeding events. At the time of this publishing, the durability of this treatment is unknown.
In the Community: Outreach Nurses and Social Workers
For HoG, the best care means serving patients comprehensively in both a medical setting and out in the community. In fact, in 2022, the organization conducted more than two thousand home visits by eight outreach nurses and three thousand virtual and home visits by four social workers across the state. During each in-home meeting, the highly trained professionals showed patients how to infuse or inject their medications, discussed mental health issues, helped families navigate insurance coverage complications, and much more.
“I oftentimes think about when I was sick as a child and our family physician would make a house call. It’s a shame that healthcare has gotten away from that today because I think there’s such value in that model. And that’s how we are structured to operate at HoG,” Rosato observes.
“Hemophilia is a lifelong chronic disease with no cure to date, and our role is to ensure that all psychological and general health needs of patients and their families are taken care of.”
That outreach dates back to the earliest days of HoG and began with Jo-Anne Donally, RN, who joined the organization in 1976 as medical coordinator and served as an outreach nurse. Her goal was to provide in-home infusion training to patients of all ages. Additional nurses came on board in 1990, as did several social workers—and they did so with one collective goal in mind. “Our nurses and social workers strive to improve the health and outcome of our patients,” Matz explains. “We want to empower patients and their families to become independent and manage their own disease. All of our services are an extension of that.”
While HoG’s outreach nurses focus on the clinical aspects of care, the organization’s social workers complement that work with an array of critical services that address mental health, medication compliance, and life issues such as stress management, among others. The social work arena goes far beyond those issues as well, placing a spotlight on insurance and the financial challenges of having to secure such expensive medication
on a regular basis. This element was particularly important upon the passage of the Affordable Care Act in 2010, when a majority of hemophilia patients could not get insurance coverage because of their pre-existing conditions. HoG’s social workers got to work helping patients navigate the new insurance landscape. Even individuals who did not use HoG’s nursing services—who are referred to as HoG clients rather than patients—were able to get assistance from the organization’s social workers. Offering that kind of comprehensive service has always been a point of pride for HoG, which offers both its nursing and social work services free of charge to anyone in Georgia who has a bleeding disorder. HoG knows it takes more then medicine to improve lives and always goes above and beyond to ensure that people with bleeding disorders can live as normally and productively as possible.
“The
resources and programs that Hemophilia of Georgia (HoG) offers have gone a long way in helping Owen understand how to deal with VWD, not only how to accept it, but how to live with it and remain positive.”
—Ryan
C., father of Owen, a young client
“There was a gentleman who had not had insurance in years, and he had multiple serious co-morbidities associated with his bleeding disorder. I helped him through the process, and he was finally able to get insured,” recalls Gillespie, who joined HoG in 2010 as a social worker before becoming COO in 2022. “To have him be able to have a reliable stream of factor because he was now insured is probably one of the top points of my career. For him, it was life changing.”
Of course, HoG’s outreach nurses and social workers do not only serve patients in their own homes—they also go out into the community to help educate others about bleeding disorders. In addition to visiting family,
“Being
with other kids who had hemophilia and seeing how they did not let it hold them back made me confident I could live life normally and safely if I managed risk and was proactive in my treatments.”
medical providers who may not know how to work with someone living with hemophilia or von Willebrand disease, nurses and social workers often educate and train school faculty, administrators, and nursing staffs on behalf of HoG patients and clients. As Rosato notes, “Receiving bumps and bruises on the playground or in gym class is normal for most children. However, for a child with hemophilia, it could have serious consequences if proper precautions are not taken. This is why education is so very important not only for the school administration and teachers, but also for the families and caregivers of the child with a bleeding disorder.”
—Zach
C., client
“We go to the schools when we are requested by the patient’s family, often when the kids are telling their parents they are being treated differently. With the proper precautions, these children are capable of going to recess or gym class, and we want to give them the tools they need to be able to do that,” says Deniece Chevannes, vice president of public policy, health equity, and research. “So we go into the schools and explain what hemophilia is. We give them emergency numbers and show them how the child’s medication works. We’ll have training sessions with the school nurse and the teacher because we want kids to have all of the school experiences.”
Additionally, as children with hemophilia age, they must learn to transition from childhood care into adult care. This includes moving off of their parents’ insurance coverage at the age of twenty-six and learning how to manage their own condition and financial challenges. Social workers
readily step in during this time. As Matz says, “Every part of our organization is here to support the health and well-being of our patients and clients.”
Live and Learn
While clinical and financial considerations are central elements in Hemophilia of Georgia’s programming, building a sense of community is just as significant for the organization. That is because, according to Kim Williams, individuals with a bleeding disorder recognize the rare nature of their condition and often feel very isolated. “They sometimes feel like they are the only one,” she says. “To meet somebody who’s going through the same journey is so powerful and helps people feel like they’re not alone. We had to figure out how to provide that experience for those individuals.”
Happy Campers
A concerted effort to bring those with a bleeding disorder together began as early as 1978, when Camp “Blood, Sweat, & Tears” took campers on a four-day adventure at Camp Glisson in Dahlonega. The next year, campers returned for a similar experience; soon enough, camp opportunities through the NHF Georgia Chapter became available annually, with boys and girls from Georgia traveling to summer camps in locales like Colorado, California, and South Carolina. However, in 1994, executive director Trish Dominic; director of training, research, and advocacy Jeff Cornett, RN; and vice president of programs Ruth Brown decided that HoG needed to host its own summer camp for children ages seven to seventeen. Thirty-six campers attended, and they, along with their counselors, voted to call the weeklong gathering Camp Wannaklot. Williams actually began her career with HoG as a volunteer camp counselor nearly twenty years ago.
“The thing I really admired about this camp was that everything was accessible,” Williams notes of the camp, which grew to serve one hundred campers annually by its thirtieth season. “Nobody told the kids they couldn’t do something. The key was to normalize the experience and just
Camp Twin Lakes staff welcomes campers at the 2021 Camp Wannaklot.
modify everything so they could enjoy it. And to this day, their doctors and nurses from the HTCs, outreach nurses, and social workers all come to camp. We offer everything to them so they can safely play, but if they get hurt, we are prepared and staffed to treat them properly. We have ice packs, bandages, infusion supplies, and everything they need, including experts in their field.
“The best advice I would give is to be proactive in your treatments, ask questions of your doctors and nurses, and stay as active as possible! It is so important to be active and keep your muscles strong. As I always say: Take care of you and your joints while you are young so they can take care of you when you are old.”
—Jimmy W., client
It’s very freeing. And there’s a lot of power in the friendships they build in an environment like that.”
Of course, as with all HoG programs, Camp Wannaklot also features an educational element.
“When I first came to camp as a counselor, kids were learning to self-infuse their medication. Now they have medications that are injected subcutaneously, and they learn to do that,” recalls Williams. She notes that the same focus on education is included in the twice-yearly family camps, which are also held at Camp Twin Lakes in Rutledge. These special camps bring families together for a truly memorable experience by allowing immediate and extended family members to join participating children for an array of outdoor activities, workshops, and training sessions. One of the most popular options has become The Clotting Game, which teaches participants about the complex process associated with getting blood to clot. Regardless of which camp individuals and families attend, HoG is dedicated to helping those with hemophilia and other bleeding disorders work on their independence and learn how to effectively manage their condition.
Kim Williams, senior director of client engagement, speaks in 2021 at DayintheGarden, one of HoG’s educational events for women with a bleeding disorder held at the Atlanta Botanical Garden.
In 1990, the Centers for Disease Control and Prevention (CDC) and the Health Resources and Services Administration (HRSA) designated Hemophilia of Georgia as a Regional Core Center. According to Deniece Chevannes, who also serves as director of the Southeast Region Hemophilia Network, the designation allows HoG to oversee and administer a HRSA federal grant that supports a network of twenty-six hemophilia treatment centers (HTCs) across the region and helps the area meet the emerging needs of bleeding disorders patients. Receiving the designation is one of the key accomplishments for Trish Dominic, who in 2008 became CEO and was dedicated to growing and enhancing HoG during her thirty-year career with the organization.
Hit ’Em for Hemophilia Golf Tournament
In 1982, Hemophilia of Georgia was looking for unique ways to raise funds for research for the bleeding disorder community. Bill Acree, one of the fathers from the original group of founding families in 1973, was the travel coordinator for the Atlanta Braves and had spent time while traveling with the team researching hemophilia treatment centers around the country. With his deep connection to the team, Acree had the idea to develop a unique partnership between the Braves and HoG—and in 1983, the first Hit ’Em for Hemophilia Golf Tournament hit the fairway to raise funds for research. The tournament quickly became a can’t-miss event for baseball players and coaches, including Tom Glavine, Bobby Cox, and John Smoltz, as well as a host of celebrity golf enthusiasts. Hundreds of players hit the links annually, playing on courses at such renowned locations as the Château Élan Golf Club and the Golf Club of Georgia. It also drew key sponsorships from major corporations like ADP, AT&T, and Chick-fil-A. Each year, the tournament has brought in hundreds of thousands of dollars designated specifically for research to find a cure. And in 2022, the tournament celebrated its fortieth year supporting the bleeding disorder community.
One of Hemophilia of Georgia’s founders, Bill Acree (right), is congratulated for receiving an award for his dedication to and support of HoG’s Hit ‘Em for Hemophilia Golf Tournament.
In Any Event
A Time of Turmoil
On the twenty-fifth anniversary of the death of Ryan White, the young hemophilia patient who contracted HIV after a blood transfusion in the 1980s, Jeff Cornett, RN, MSN, HoG director of training, research, and advocacy (pictured left), recalled what the bleeding disorder community went through during the turbulent time when the AIDS epidemic wreaked havoc because of the tainted plasma-based medications that entered the system. He wrote, “As the general public was learning about the connection between hemophilia and AIDS, the hemophilia community in Georgia responded by becoming secretive.” The stigma of AIDS caused many to hide their bleeding disorder.
Hemophilia of Georgia (HoG) sought to improve this and played an important role in raising awareness and understanding about AIDS and its impact on the bleeding disorder community. In 1987, HoG, under the direction of then-executive director Trish Dominic, decided to get proactive and worked to change the perception of bleeding disorder patients during the AIDS epidemic. Dominic developed an AIDS education program, implemented a plan for AIDS risk reduction among hemophilia patients, and made a full commitment to fight the spread of the HIV infection within the community and beyond. In 1995, the CDC recognized HoG for its ongoing efforts on behalf of bleeding disorder patients everywhere.
Throughout the year, HoG also hosts a wide variety of additional client engagement and community events. According to Vic McCarty, chief development officer, every event is designed to provide resources while bringing the bleeding disorder community together. From dinners and workshops held in locations throughout Georgia to the teen retreat held each year that allows those ages thirteen to seventeen to participate in community service projects, opportunities to come together abound. And in recent years, an emphasis has been placed on serving specific communities with the information and educational resources they need most.
“As part of our strategic planning, we often identify targeted populations that we may not be reaching or need enhanced programming,” McCarty explains. For example, in 2022, programs tailored to the Hispanic community, men with inherited bleeding disorders, young professionals, and women with bleeding disorders were all added to HoG’s client event offerings. According to Rosato, each new population-specific program is laser focused on the health issues distinct to that community. The reason is simple: “HoG is a caring, family-oriented organization that continues to strive to find ways to help our patients and clients understand that we are never going to leave them on their own,” she says. “We will continue to provide them with the comprehensive care services they need to help them through life.”
Campers enjoy being with friends for a week of summer fun at Camp Wannaklot in 1988.
A cabin group from the 2021 Camp Wannaklot having a wonderful summer camp experience together while making new friends.
