Dear Senators Boxer, Coburn and RepresentativeCapps:
Please accept this letter on behalf of the undersigned organizations in strong support of legislation to amend the Public Health Service (PHS) Act to establish safeguards and standards of quality for research and transplantation of organs from HIV-infected donors. We applaud your efforts in sponsoring this legislation, which makes common-sense reforms to a medically outdated federal ban on the use of organs from HIV-infected donors to benefit HIV-infected recipients.
This legislation is the product of a two-year process that included gaining support of more than 40 national organizations including professional HIV/AIDS and organ transplantation societies, patientadvocacy groups, and general medical groups. By updating the PHS Act to reflect the current medical understanding of HIV/AIDS, this legislation will increase access to organ transplantation for HIV-infectedpatients, reduce deaths on the organ transplant waiting list, save taxpayers money, and maintain provisions to protect the national supply of organs.
As you are well aware, due to remarkable advances in HIV treatment and care over the past two decades, many HIV-infected people with access to healthcare have normal life expectancies. However, even when well-controlled with medication, the virus puts people at higher risk for organ failure, and after the onset of organ failure, HIV-infected people require organ transplants sooner than uninfected people with organ failure. In many parts of the country, organ transplant waiting times exceed seven years. Long waiting times disproportionally impactHIV-infected people who simply cannot afford to wait seven years for an organ offer. As a consequence, many people die while waiting. This legislation will increase the availability of an estimated 500 high quality organs each year for HIV-infected patients, which would have otherwisebeen discarded, providing a unique treatment option to save lives andreduce suffering.
Commonly accepted standards in medicine require that procedures undergo robust study before being accepted as the standard of care. Though preliminary evidence from South Africa demonstrates that transplantation between HIV-infected people is safe and effective, it is incumbent upon the medical community in the United States to carefully study the safety and outcomes of these transplants in the same way that transplantation of HIV-infected recipients with uninfected donor organs has been carefully studied. This legislation will enable such studies, and we must continue to encourage the NIH to continue to fund clinical and comparative-effectiveness research in this area.
Thank you again for your leadership and we look forward to helping you build broad bipartisan support for this legislation in the House of Representatives and Senate, and working with you to see that it isenacted.
If you have any questions or require anything additional from our groups, please do not hesitate to contact our organizations through Brian Boyarsky (firstname.lastname@example.org or 410-871-8252).