At HeartBrothers Foundation Annual Symposium, Experts Look to the Future


HeartBrothers Foundation hosted its annual symposium on Dec. 2, featuring top doctors and experts who shared important new details in heart failure treatment and transplantation.

HeartBrothers co-founder Pat Sullivan outlined goals and plans for the upcoming year, including a new virtual patient support group and heart failure billboard campaign.

HeartBrothers members and supporters also spent time chatting, trading health updates and information about medications, new procedures and Social Security supports.

TransMedics: OCS

Tamer Khayal with TransMedics spoke to the group about the FDA’s recent approval of its groundbreaking OCS (Organ Care System) for heart transplants. OCS is a portable, multi-organ (heart, lungs, kidney) preservation and assessment technology that mimics the human body. Warm, oxygenated blood pumps through the organs in a living, functional state.

“The lungs are breathing and the heart is beating as if it’s in the human body,” Khayal said.

The OCS for hearts was recently approved by the FDA after key testimony by Sullivan.

TransMedics says its OCS will dramatically increase the number of hearts that can be transplanted.

Until now, donated hearts could last about four hours on ice. With the OCS, that time expands to 24 hours — which means donor hearts can be transported much farther distances and reach many more people. Donated lungs can survive for a few days and donated livers can last nearly a week.

Social Security Benefits

Kevin Reino, a regional public affairs specialist with the Social Security Administration, outlined how Social Security works and what it can offer heart failure and transplant patients. He especially spoke about the Compassionate Allowance, which helps patients get the financial support they need as quickly as possible.

With a Compassionate Allowance, Social Security can expedite payments to patients whose medical conditions are so severe they obviously meet SSA’s disability standards. People who apply for a Compassionate Allowance can receive their benefits in as soon as 10 days, rather than months.

The CAL program covers 254 conditions, including Heart Transplant Wait List 1A/1B and Heart Transplant Graft Failure.

So far, more than 700,000 people have benefited from the CAL program, including about 11,000 cardiac-related claims. You can learn more about CAL and all the conditions it covers HERE.

CareDx: Health App & New Diagnostics

Marcus Fukashima presented CareDx’s new mobile health app, AlloCare, which is specifically for transplant patients. The app can be customized to:

  1. Manage complicated medication regimens

  2. Schedule doctors’ appointments

  3. Connect to other heart failure patients

  4. Track important health metrics

Learn more about AlloCare at Https://caredx.com/patients-and-caregivers/patient-solutions/allocare/.

Jennifer Gray, CareDx’s senior medical liaison, told attendees new blood tests are being developed to better monitor transplant patients’ progress.

New England Donor Services

Leaders from New England Donor Services (NEDS) presented emotional stories of donor families and how NEDS supports them through the organ donation process. Hospital Relations Coordinator Heather Harris described one scene when the family of a young ROTC cadet (who had suffered a brain hemorrhage) decided to donate his organs, knowing that he had always wanted to be a hero and help others.

Only 54% of Americans are registered organ donors and NEDS says that number should really be 100% because every single person – no matter their health – can donate.

“You can donate your tissue, bone, skin,” Harris said. “Don’t rule yourself out.”

Harris and her colleague Ingrid Palacios spoke about common misperceptions that stop people from registering to be donors and how it’s important to “bring the facts and debunk the myths.”

“You guys are walking testimony about the miracle of donation,” Palacios added.

You can register to become an organ donor HERE. Learn more about NEDS HERE.

Tufts Medical Center: Dr. Michael Kiernan

Dr. Michael Kiernan, medical director of Tufts’ Ventricular Assist Device Program, presented an update on heart failure therapies and the benefits of the new system for transplant allocation.

UNOS (United Network for Organ Sharing) determines who gets donated hearts in the United States. Three years ago, it reworked its three-tier system, giving priority to the sickest patients in wider geographic zones.

“With these changes, the average distance (from donor to patient) went from 84 to 243 nautical miles, because of broader geographic sharing. Fewer hearts stay local and more hearts go broadly within a 500-mile radius,” Kiernan said.

“Wait times have decreased from the average 198 days down to 111.”

Kiernan also spoke about the newest generation of Left Ventricular Assist Devices (LVADS), which are lowering associated risks, including stroke. There are about 3,000 LVAD implants in North America a year, he said.

The survival rate two years post-heart transplant at Tufts Medical Center is over 90%, Kiernan added.  The two-year survival rate with an LVAD is about 80%.

Cytokinetics: New Meds

Dr. Rob Kociol, senior medical director at Cytokinetics, discussed new medicines under development to improve the healthspan of people living with devastating cardiovascular and neuromuscular diseases. More information about Cytokinetics is available HERE.

Upcoming Events

The HeartBrothers Foundation has a busy 2022, with exciting new programming, initiatives, and growth.  Here’s a quick peek at what’s ahead.

  1. Eight Webinars (Throughout the Year)

  2. Virtual Patient Support Group (Monthly, 2nd Thu @ 6 pm EST)

  3. Heart Failure Awareness Campaigns

  4. March Madness Gathering

  5. 6th Annual Gustin Golf Classic

  6. Family Feud II Fundraiser

  7. 3rd Annual Member for a Day Virtual Golf Auction

  8. New York City Marathon — Boston doctors running for the HeartBrothers House

  9. Semi-Annual Corporate Meetings

  10. 8th Annual Team HeartBrothers Symposium

The HeartBrothers will continue providing information updates and resources for families of heart failure patients and friends of the organization.

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