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Robin Roland Levy, IMF Senior Director, Public Policy & Advocacy Danielle Doheny, IMF Director, Public Policy & Advocacy

IMF ADVOCACY INFLUENCES REGULATORY MATTERS, LEGISLATION, AND RESEARCH FUNDING

The IMF, through individual comments and coalition efforts, sent numerous letters to legislators on policy proposals that may impact the myeloma community. These comments were in response to proposed federal government rules and the President’s executive orders. One of those rules was the Centers for Medicare and Medicaid Services (CMS) inpatient prospective payment system (IPPS). The IMF’s collaborative advocacy work resulted in the creation of a MS-DRG (diagnostic code) for CAR T-cell therapies. Also, the advocacy team ensured the myeloma community’s interests were heard during COVID19 negotiations, including those for oral parity and telehealth. The team called for an out-of-pocket cap for Medicare recipients. In the traditional Medicare program, there is no annual dollar limit for out-of-pocket expenses. If a Medicare Out-Of-Pocket Cap is implemented, Medicare patients would have a yearly limit on their out-of-pocket drug expenses.

To improve patient access to oral chemotherapy drugs, the IMF Advocacy team endorsed H.R. 1730/S. 741, The Cancer Drug Parity Act. This legislation will prevent insurers from imposing higher cost-sharing for orally administered drugs versus intravenous (IV) therapies. Because of COVID-19, this bill gained more importance since some patients were transitioned onto oral drugs when medically appropriate.

Other legislation endorsed by the IMF includes: • H.R. 913*, The Clinical Treatment Act: This bill would improve access to clinical trials for patients with Medicaid. • H.R. 1966*, The Henrietta Lacks Enhancing Cancer Research Act:

This bill would require a study to be performed about barriers that exist for patients who are underrepresented in clinical trials. • H.R. 7647, The Preserving Patient Savings on Drug Costs Act:

This bill ensures patients aren’t faced with the financial burdens that stem from co-pay accumulator programs. These programs prevent manufacturer assistance from being counted towards a patient’s yearly out-of-pocket limit. *signed into law

The IMF, in collaboration with various coalitions, advocated to increase funding for the National Institutes of Health, the National Cancer Institute, and the Food & Drug Administration, helping scientific progress and bringing new therapies to patients more quickly.

VETERANS AGAINST MYELOMA REPORT

In 2020, the IMF’s Veterans Against Myeloma (VAM) program focused on making sure multiple myeloma remains recognized as a serviceconnected disease and launched a new firefighters initiative. VAM ensured myeloma researchers are able to apply for grants through the Peer Reviewed Cancer Research Program (PRCRP) within the Congressionally Directed Medical Research Programs (CDMRP).

The PRCRP is a program through the Department of Defense. It allows researchers to apply for grant funding researching diseases specified by Congress. Each year, the IMF meets with relevant offices on Capitol Hill to guarantee that blood cancers remain as a topic area for research. VAM successfully recommended consumer reviewers to the PRCRP’s myeloma panel. This action gave patients and caregivers the opportunity to decide which research gets funded.

On January 1, 2020, the Blue Water Navy Vietnam Veterans Act took effect. This law restored the presumption of Agent Orange exposure to an estimated 60,000 veterans who served within 12 nautical miles off the coast of Vietnam during the Vietnam War. It also makes it easier for this population to receive care and benefits from the VA. Myeloma has been directly linked to Agent Orange exposure. The IMF Advocacy team worked for the law’s passage and continues to monitor its implementation.

Other VAM initiatives include revising the Guide to Benefits for veterans, supporting burn pit registry legislation, and advocating for legislation that would help military and civilian firefighters access benefits.

MEMBER FUNraisers

ANTI-CANCER TRIVIA NIGHT / MAY 5, 2020

For the third year, comedians teamed up for an Anti-Cancer Trivia Night. The pandemic didn’t stop them. In 2020, they brought the audience online using Twitch!

Organizers: Josephine McAdam, Forrest Shaw, Francisco Ramos, and Andy Ostroff

MIRACLES FOR MYELOMA VIRTUAL 5K WALK/RUN / SEPTEMBER 26, 2020

Ron and Sheree Pask proudly hold a Miracles for Myeloma sign with their sons Matt Pask and Matt Ripa, and their twin girls Maci and Madison.

Organizers: Ron and Sheree Pask, Gina Klemm JULIE’S COUNTRY TO TOWN BIKE RIDE FOR A CURE / MAY 30, 2020

Cyclist in the event, Mike Wolniewicz, waits outside one of the stops on the Bike Ride for a Cure.

Organizers: James and Julie Tuttle

IMF SUMMER CAMP / SUMMER 2020

IMF Staff Members challenged their co-workers to organize walks, runs, and more to raise money for the organization as part of IMF Summer Camp.

Organizers: Karla Lemus, Sarah Solomon, Joy Riznikove

DONOR SPOTLIGHT

Kirsten and Dave Clark posed for a holiday photo in their home.

FINGERPRINTS ON THE FUTURE OF MYELOMA CARE

Dave Clark is a model of resilience. Having lived with four cancers, he maintains a positive outlook and is his own advocate.

In 1996, Dave was diagnosed with non-Hodgkin’s lymphoma (NHL). He underwent radiation at the Mayo Clinic in Rochester, Minnesota. While he was at the Mayo Clinic, Dave recalls, “There were kids coming in for radiation at that time, and a lot of the kids were in rough shape. I was in my forties and had a healthy life to this point. I could see the young kids coming in and playing. I just kind of knew then that I was blessed. That put me on a positive and optimistic path with my cancer.”

Dave’s doctor at the time was S. Vincent Rajkumar, MD, now a member of the IMF’s International Myeloma Working Group. He remained Dave’s doctor for a long time. After 14 years, Dave was declared cured from the non-Hodgkin’s lymphoma.

When Dave was being screened for NHL, he also got screened for myeloma. After two subsequent screenings, Dave was diagnosed with smoldering myeloma in 2010.

Dave decided to retire that year, leaving behind his successful food engineering company in La Crosse, Wisconsin, and moving to Phoenix, Arizona, with his wife. Dr. Rajkumar connected Dave with Dr. Joseph Mikhael. At the time, Dr. Mikhael was a practicing myeloma specialist at the Mayo Clinic in Scottsdale, Arizona. Dave remembers Dr. Mikhael’s original myeloma prognosis. “Dr. Joe” told Dave, “We can get you probably five to ten years. There are things on the horizon that might go farther; but for now, we feel comfortable in telling you we can get you some time.”

In 2012, Dave underwent an autologous stem cell transplant, but he only experienced a short eight-month remission. Unfortunately, in 2014, Dave also faced melanoma. Luckily, the malignant melanoma on his leg was extracted and he fully recovered from it. In 2016, a tumor was spotted in Dave’s lung, and initially it was considered benign. Then, a year later, the classification standards for the tumor changed and it was considered malignant. To participate in clinical trials, patients need to be free from other cancers. As a result, Dave was not able to enroll in a clinical trial.

Dave’s myeloma progressed, leading to bone damage. He remembers, “It was starting to get pretty bleak. Dr. Mikhael, now a member of the IMF, knew what studies were going on. He was kind enough to introduce me to some hospitals—one being the City of Hope. He introduced me to Dr. Amrita Krishnan, whose team was conducting CAR T-cell testing.”

The study was a great fit except for one caveat: The study required patients who only had reoccurrence or a continuation of myeloma alone. Because of Dave’s lung tumor, he had to wait four more months to be eligible. To maintain Dave’s eligibility for the study in the future, his

Dr. Joseph Mikhael and Dave Clark at the Silverleaf Country Club in Scottsdale, Arizona.

healthcare team treated him with a new bispecific agent for those four months. His myeloma continued to progress. He explained, “I now had many lesions in my bones. I also had a rapid-growing tumor on my skull.”

The tumor was causing Dave’s vision to become blurry and other complications. His team at City of Hope pushed even harder to move Dave to a CAR T-cell study. While Dave’s healthcare team was at the City of Hope, Dr. Mikhael remained connected and also pushed for Dave entering the study.

Dave couldn’t be more grateful for his team. He underwent CAR T-cell therapy and was in the hospital for six weeks. Over that time, the multiple myeloma in his system was practically eradicated, and Dave had a very low level of residual disease. The tumor in his skull dissipated. This was in April of 2019. In December 2020, Dave had another bone marrow biopsy, showing no further progression or return of the myeloma.

The International Myeloma Foundation is fortunate that patients like Dave cross paths with the organization. In 2018, Dr. Joseph Mikhael was appointed Chief Medical Officer of the IMF. He and Dave remain friends to this day. In fact, Dave first attended the IMF’s Comedy Celebration in 2018 in Los Angeles to reconnect with Dr. Mikhael, and the two sat together at the event. Laughter is essential and that night, the two got their fill from some of the top comedians in the country.

The IMF is also grateful for Dave for his continual support and donations to the organization. When asked why he gives to the IMF, Dave said, “It wasn’t that long ago, the disease would be caught pretty late, and patients had fairly short life spans…Now, it’s been about two years that I’ve been basically cancer-free with a cancer that has a high mortality rate. The work the IMF does is really focused on many areas, besides helping people like me. It translates these findings around the world. It just makes a lot of sense. I’ve been living with this for 11 years now. The prognosis is not 1 or 2 years, nor 5 to 10 years anymore. A cure is very close, and I know the next advancements are going to come from people like Dr. Joseph Mikhael and organizations like the IMF.”

Dave continued, “I know Dr. Joe’s heart, and along with the entire IMF team, he is focused on finding a cure. They are focused on this not just for people in the U.S., but for people all around the world. Joe talks about a vision for other countries to enjoy the same healthcare advancements in the U.S., especially in developing countries. This is a large part of what the IMF and Dr. Joe are personally pushing for. This is big stuff that cannot be done from one office or one country. You have to get out and communicate and see people, and that takes funding. These discoveries can translate into advancements for all cancers. And that’s what IMF is...It really is a conduit of pulling all the best people together to get the best results.”

“I learned early on in my business career: communication is what works. Bad communication or no communication always delivers bad results. Good communication can turn into great things.”

“Look at me,” Dave says, “The studies are successful. It’s those that have their fingers on the pulse of the studies that are doing the great work. The IMF is one of those organizations that pushes the needle forward. There are many people that I need to thank for the reason I’m still here. It’s a huge list, and I’ll never be able to thank them all. I do understand that to help others is what my family has to do—to pay it forward. Helping organizations like the IMF is our way to maybe make a modest impact. An impact my grandchildren and others’ grandchildren will hopefully benefit from.”

“I know Dr. Joe’s heart, and along with the entire IMF team, he is focused on finding a cure. They are focused on this not just for people in the U.S., but for people all around the world.“

JOIN THE HOPE SOCIETY:

OUR MONTHLY GIVING PROGRAM

Monthly gifts starting at $10 support IMF core programs, including educational events, publications, the toll-free InfoLine, and more! New members can select a limited edition Hope Society gift! Contact Jonathan Weitz, IMF Donor Relations, at 1-800-452-2873 ext. 254 or jweitz@myeloma.org to learn more.

DONATE STOCK TO CHARITY

Donations of stock or other securities offer ideal opportunities to receive additional tax benefits through your philanthropic giving. Should you or your financial advisor have additional questions, please contact Jennifer Scarne, IMF’s CFO, at 1-800-452-2873 ext. 238.

MAJOR/PLANNED GIVING

The IMF welcomes many methods of charitable giving: one-time gifts, multi-year gifts, IRA contributions, donor-advised funds, public and private foundation grants, bequests, and more. These gifts are an excellent way to receive additional tax benefits. Contact Lynn Green, IMF Senior Vice President, Philanthropy, at lgreen@myeloma.org to learn more.

ONE-TIME GIFTS

You can also make a one-time gift at any time. All amounts help— from $5 to $500. Visit donate.myeloma.org NOW!