Recently, the brilliant author and two-time heart transplant recipient Amy Silverstein passed away. In one of her last messages, she asked that members of the transplant community contact the American Society of Transplantation (AST) to insist that they push for improvement in the immunosuppressant drugs currently in use. I wrote this letter in response to her final request and circulated it among my contacts in the transplant community to be used as a form letter if they did not want to write a letter of their own.
Text of the letter below:
“I am writing regarding the immunosuppressant regimen required by solid organ transplant recipients. I received my first heart transplant in 2006 and am in my eighteenth year of taking drugs designed to prevent the rejection of my heart. I have developed conditions from the side effects of these drugs that keep me from obtaining gainful employment. Over the course of these years, I have seen many of my fellow transplant recipients fall victim to kidney failure, cancer, osteoporosis, and other serious ailments caused by the long-term use of these drugs. In virtually no other population would these outcomes be acceptable.
Recently, UNOS celebrated one million transplants, but the drugs used to prevent rejection have largely remained unchanged since the previous century. One million people is a large enough population to attract the focus of researchers and pharmaceutical companies to improve the science of anti-rejection drugs, but they have not done so.
We transplant recipients are organizing to demand that the focus on improving these drugs be brought to the forefront at upcoming AST conferences to stimulate and motivate researchers and drug companies to make improvements on these drugs. As transplant recipients, we are grateful for this gift of life, but we can both be grateful and still demand better outcomes from the long-term use of toxic medications.”
In response to Amy’s essay in the NY Times, and potentially bolstered by the letter writing campaign, the AST posted a public reply.
Link to Amy’s essay in the NY Times:
Opinion | My Transplanted Heart and I Will Die Soon – The New York Times (nytimes.com)
Link to the reply from the AST:
https://www.myast.org/nyt-letter-editor-my-transplanted-heart-and-i-will-die-soon
This is a sign of hope for the transplant community, but our work is only just beginning. We must continue to push for improvements and engage with the governing bodies who make these important decisions.
The transplant community program manager at the AST e-mailed a reply to my letter above. In this reply, she outlined several ways that transplant recipients, their families, and anyone else interested in this issue can get involved and push to make our voices heard.
- Follow the AST on social media to stay up to date on timely topics:
Facebook: Power2Save: One Transplant for Life
Instagram: @power2saveorg
Twitter: @ThePower2Save - Participate and make your voice heard by government committees. The Living Donor Protection Act is a bill currently before congress that is proposing to allow living donors to use FMLA time to recover from surgery. Under existing legislation, employers are not required to allow employees to use FMLA time to recover after donating a kidney or any other organ or tissue. This legislation would require FMLA to be made available for that recovery time. You can follow this link to contact your local legislator to express your support for this bill. https://www.myast.org/public-policy-1#/
- In June, the AST will be launching a recipient patient survey to focus on the unmet needs within the transplant community, and they will be working with the FDA to create changes. If you wish to participate in this survey, please keep an eye on their social media for the posting.
Thank you for following me, and I will continue to advocate for both the quality and quantity of life for transplant recipients.
Dawn Levitt, Author 