The Unsung Heroes: Immunosuppressive Drugs

By Suzanne Ruff, AAKP Board of Director, Living Donor, Author of The Reluctant Donor

 

Oh, how I wish Congress understood what the legislation to extend Medicare immunosuppressive medication coverage means to those of us touched by organ donation!

For my family, it is because of kidney disease. But, there can be many different reasons a person needs an organ transplant.

My family has had six kidney transplants to six different people! If a kidney recipient doesn't take their immunosuppressive meds, they lose their transplant and need dialysis which is far more expensive than the medications. Why? Because kidneys don’t grow on trees and there are over 90,000 people waiting for a kidney transplant.

If you are lucky enough to receive a transplant, you have received a tremendous gift and must do everything humanly possible to keep it. Did you know that when Congress approved the coverage of immunosuppressive drugs for transplant recipients that a transplanted organ was expected to last two to three years?

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Mainstream media has been instrumental telling the stories of organ transplantation. The media recently showed the power of being a deceased donor with a recent video. I sat and sobbed, shoulders heaving, nose running as I watched. The staff at a hospital stood in honor, side by side, in the hallway as a gurney passed. The deceased patient on that gurney was being wheeled into the operating room for the harvesting of his organs. A stranger selflessly saving the lives of eight others with his donated organs.

Touching stories of donors, donor families, and recipients show the joy and sorrow of organ donation. Because the need for donors is so great, more and more media coverage is also given to people looking for donors. It is an incredible sacrifice for a living donor to save the life of another. Stories of successful outcomes prove and show the world that organ transplantation works!

But, what is not usually featured is information that explains what and how the miracle of organ transplantation works: the unsung hero of the transplant is the immunosuppressive drug needed to prevent rejection of the transplanted organ! Back in the early years of transplantation, it was a difficult and calculated experiment on the part of doctors as to how to keep the newly transplanted organ (our bodies don’t know a transplanted organ is a ‘good’ foreign object) from being rejected by the recipient’s body. Anti-rejection drugs that suppress the recipient’s immune system were the answer. Hence the term: Immunosuppressive Drugs.

Think about what and how stressful it must have been for the surgeons to figure how to keep the body from rejecting that organ, and how to save the patient. We owe a debt of gratitude to those who went before us in the early years of transplantation, Dr. Joseph E. Murray who is credited with performing the first kidney transplant in 1954 between identical twin brothers, figuring the risks of rejection would be less likely. But, Dr. Murray also worked diligently with scientists experimenting with immunosuppressive drugs so others could receive transplants.

My Uncle Bill needed dialysis before it was covered by Medicare in the 1960’s.   Uncle Bill didn’t like dialysis and went to Johns Hopkins to be considered for a transplant. After two years on dialysis, he received a kidney transplant in the early 1970’s. He was told of the risks regarding the immunosuppressive drugs: He was told powerful anti-rejection drugs can cause a patient to be unable to ward off infections and vulnerable to cancer. “I’ll take the risk,” Uncle Bill stated, firmly. The transplant gave him seven more years of life, although he did develop cancer from the anti-rejection drugs. He was fifty-nine years old when he died, but he helped kidney patients everywhere with his willingness to take risks.

I like to think Uncle Bill helped my mother and my sisters. My mother lived an additional fifteen years of life after receiving a kidney transplant. My youngest sister is twenty-four years post-transplant and my other sister is fourteen years post-transplant.

While I was going through testing to become a living donor, I attended a seminar that told the story of a sixteen-year-old young man who received a transplant from his mother. Three years later, when his immunosuppressive drugs were no long covered by insurance, he had no job and no insurance. The young man decided since he was his mother’s son, his body couldn’t possibly reject the organ. Sadly, his body did reject his mother’s kidney and he had to be dialyzed. Think about the nightmare of that decision!   The tremendous loss involved and the taxpayer money wasted.

If a transplanted kidney is lost, the government pays for their dialysis which costs the taxpayer a lot more money than the drugs cost in the first place. A person with a kidney transplant may have been a contributing member of society, perhaps happily working a job or raising children. But, if that person loses the transplant because he did not take his immunosuppressive drugs . . .he becomes ill.   As a living donor myself, I cringe in horror just thinking of anyone losing an organ donated by a living donor because they did not take their immunosuppressive drugs.

A united effort is desperately needed, by the medical community, the pharmaceutical companies, and the government to work together to come up with a solution that makes sense, doesn’t waste taxpayer money, and honors the gift of all donors, living and deceased, by making immunosuppressive drugs available no matter anyone receiving a transplanted organ.

 

Act now and visit the AAKP Action Center – sign up for alerts on the latest news and information on legislation and policy issues. Sign the Immunosuppressive Drugs petition.