A WHOLE LOTTA HOPE

After an organized, well fought, and fully bi-partisan effort, the HOPE (HIV Organ Policy Equity) Act became U.S. law, signed by President Obama on November 21, 2013. This new legislation removes the previously existing legal barrier to all research on the transplantation of HIV-positive organs in humans.  Present at the legislative signing were the President-elect of the American Society of Transplant Surgeons, Dr. Peter Stock and the President of the American Society of Transplantation, Dr. Dan Salomon. As previously noted HIV-positive transplant candidates had been legally prohibited from receiving HIV-positive organs by the Organ Transplant Amendments Act of 1988, even though cautious exploration of this strategy (a logical potential step in expansion of the too small pool of donor organs) was widely supported.

The logic thread is based on successful transplant outcomes with Hepatitis C. With this infectious disease, organs from infected (or potentially infected) donors are transplanted into recipients known to already be infected with the same virus. This clever strategy, while avoiding the transmission of a new disease (since the recipients are already infected with it) and thereby causing a brand new problem at the time of transplantation, is actually a means of successfully expanding the too small pool of deceased donor organs. Of course, the recipients must be informed about the donor's infection and asked for consent in advance - many (but not all) do agree to proceed. Long term results of liver and kidney transplants for previously infected recipients have been equivalent for those receiving either Hepatitis C -ve or +ve organs. And, future results in both circumstances may prove even better with the advent of new, highly effective anti-viral Hepatitis C drugs. So, instead of completely wasting the organs from a Hepatitis C +ve donor, they are ADDED to those effectively transplanted - saving lives.

Now, it will be possible to explore the possibility of transplanting HIV +ve organs into HIV +ve recipients. In fact, we have long had better anti-retroviral therapies (to treat HIV) than anything available for Hepatitis C. Yet the 1988 law had halted all potential progress. But not now! So, let's move forward.......consider further broadening the breadth of donors (maybe even living donors who are HIV +ve?) and helping a specific subset of transplant candidates. This was/is a win-win for all.

WHAT EVER HAPPENED TO DICK CHENEY?

Time can fly, especially for transplant recipients. Remember the buzz and controversy surrounding former Vice President Richard Cheney's heart transplant on March 24, 2012 at the age of 71? That news story essentially quieted down after a few weeks. No-one at the national level seemed to notice when the major transplant landmarks of one year graft and patient survival were happily met 4 months ago. And there has been no celebration of his high level return to political life that has occurred insidiously, with interviews and occasional speechs (Dick Cheney full return to active politics 6/16/13 ) popping up. There has been no attribution of his active lifestyle to either the deceased donor's gift, or to the hard work of the transplant team, in part or in whole. What has happened is quite simple. He has re-engaged in his life. Transplantation, the donor's heart, the amazing anti-rejection medications (which the Vice President must be taking reliably) are combining to restore a man's ability to live his life. Whether his politics match yours or not, he is living up to his own previous standards of outspoken opinions on hot, important topics. This is the magic of transplant. If the VP is lucky (and adheres to medical advice and medications, etc) we won't have particular reason to notice his next benchmarks at 3 years either!

In follow-up of a different transplant, Grzegorz is not a name that will ring bells for most of us. But you will surely recognize the images taken shortly after he received Poland's first face transplant on May 15, 2013. You will also recall the horrific story of a stone cutting machine causing the trauma that induced his emergent need for that transplant. The terrific follow-up news came today that he has gone home, breathing and eating on his own a mere 11 weeks after the transplant. The report is that he is also speaking, although the words are still a bit difficult to understand. His speech is expected to improve as the nerves regenerate to the muscles in the transplanted face. The process is likely already underway as he is experiencing pins and needles in his cheeks. Although standardized goals and benchmarks have not yet been fully established for face transplants, 1 and 3 year patient and graft survival are likely to be selected. We will surely breathe a collective sigh of relief when Grzegorz meets the first of these, won't we?

The final follow-up to be reviewed in this posting is not a happy one, but pertains to a story that is likely also familiar to you, the live donor kidney that was inadvertently discarded and wasted in a tragic human error in 2012. Both the live donor and recipient are reportedly well. A transplant did subsequently occur with a different kidney, but the family has now sued the original transplant hospital.

Life goes on. When donation and transplantation are the causes of life going on for recipients we should be especially grateful. Not necessarily mentioning it at every moment of every day........but at least acknowledging from time to time that life can never be taken for granted. And when someone gives so that one or more recipients may benefit, a beautiful thing has taken place.

EVEN MORE HOPE !

An earlier post on June 19, 2013 delved deeply into the rationale behind the HOPE Legislation currently in the U.S. Congress to permit cautious exploration of the use of HIV +ve donor organs for transplantation into HIV +ve recipients, along with appropriate observational research. At that time the Senate had unanimously passed the bill but the House of Representatives was just beginning to take action.

Now there is good news that on 7/17/13 the Energy and Commerce Committee of the House of Representative also voted unanimously to pass H.R. 698. Additional co-sponsors have also signed on to Representative Lois Capps' bill - now at a total of 51 (12% of the 435 Representatives). Now we await action from the entire House of Representatives.

This legislation is an important bipartisan effort, supported by multiple medical, patient and social organizations because it represents a potential win-win for everyone. Expansion of the organ donor pool, carefully supervised clinical research with informed consent of the participating subjects, oversight by the government, support of the major transplant organizations, potential reduction of transplant candidate deaths, etc. 

Keep tuned to this blog for updates as additional steps happen. It is beginning to look like this legislative action may become real in the not too distant future.

TRANSPLANT JARGON EXPLAINED

A GLOSSARY OF TRANSPLANT TERMINOLOGY

• allocation - algorithm for distribution of a deceased donor organ
• allograft - a donor organ from a non-identical member of the same species (e.g., parent to child)
• autograft - a donor organ from a genetically identical member of the same species (e.g., between clones or identical twins)
• cold ischemia - time between cessation of blood flow to the donor organ and restoration of blood flow during transplantation
• en bloc - organs that remain anatomically connected (e.g., 2 pediatric kidneys still attached to the aorta and vena cava)
• DCD - Donor after Circulatory Death is a deceased organ donor whose death was declared based on cessation of cardiac activity
• deceased donor - a human being whose organs have been removed after death for the purpose of transplantation
• delayed graft function (DGF) - a newly transplanted organ that is alive (receiving blood flow) but has not yet begun to function (e.g., a transplanted kidney that is not yet making urine)
• donor service area (DSA) - the geographic region that is the smallest unit of organ allocation and is served by one OPO
• EPTS (estimated post transplant survival) - a formula based on four medical factors about the transplant candidate (age, time on dialysis, presence of diabetes, history of a prior transplant) that determines the statistical likelihood of survival of a patient in comparison to other patients 
• expanded criteria donor (ECD) - a deceased organ donor who meets the UNOS definition of a less than optimal donor because of age, cause of death or medical history. In general, these organs are more vulnerable to all types of transplant related injury than standard criteria organs.
• graft - organ +/- tissue that is transplanted
• KDPI - kidney donor profile index is a numerical measure that combines ten dimensions of information about a donor, including clinical information and demographics, to express the quality of the donor kidney relative to other donors.(optn KDPI source info). Ranging from 1-100%, a value of 75% means that this kidney has a relative risk of failing that is higher than 75% of deceased donor kidneys.
• immunosuppression - pharmacologic or biologic therapy administered to diminish the strength of the response of the immune system
• import - an organ that has been recovered in a different UNOS region or DSA and transported in to the transplant center and patient. Importanting an organ prolongs the cold ischemia period.
• LYFT (life years from transplant) - the statistical quality adjusted survival benefit provided by the transplantation of a given organ to a given recipient
• multi-visceral - a transplant in which more than one abdominal organ is transplanted, usually involving the liver +/- pancreas, duodenum, stomach, small intestine
• NOTA (National Organ Transplant Act) - federal legislation, P.L. 98-507,  enacted in 1984 to address the organ donation shortage and to improve organ matching and placement. The act and its amendments establish the national registry for organ matching and call for a transplant network to be operated by a non-profit organization under federal contract.
• opo (organ procurement organization) - a private, non-profit organization responsible for increasing donor registration in the assigned donor service area and for coordinating the donation process in the service area hospitals.
• OPTN (organ procurement and transplantation network) - established by the U.S. congress when it enacted the National Organ Transplant Act (NOTA), this is a unified transplant network to be operated by a private, non-profit organization under federal contract.
• rejection - recognition and attack of the transplanted organ and tissue by the host's immune system
• standard criteria donor (SCD) - a deceased organ donor who does not meet the UNOS definition of an expanded criteria donor. In general, these organs are most likely to function promptly after transplantation, and most likely to continue functioning for may years.
• SRTR  (Scientific Registry of Transplant Recipients) - the primary source of transplant data in the U.S., containing information from 1988 and later. These data are developed from mandatory transplant center reports and are used by multiple regulatory agencies and researchers.
• tolerance - a host's immune system's failure to recognize and respond to a specific donor's organ (or other stimulus) while retaining all other functions
• Thrombosis - the condition of blood clot blocking flow through a blood vessel
• UNOS (United Network for Organ Sharing) - the private, non-profit organization that manages the nation's organ transplant system under contract with the federal government.
• VCA (vascularized composite allograft) -multiple tissues such as muscle, bone, nerve and skin that are transplanted as a functional unit and require the surgical attachment of blood vessels (e.g., a hand or face).
• xenograft - a donor organ from a member of a different species (e.g., pig to human)

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