Donor Organ Plan Would Favor Politics Over Patients’ Lives

Last year more than 68,000 patients were listed as needing an organ or tissue transplant and only 17,000 organs were donated. That means only one of every four patients who needed a transplant could have one.

How would it feel to be one of the other three--knowing that you could die because of the scarcity of donor organs and the rules by which they are handed out?

It feels awful. I know, because I have been there. For six years, I knew my kidneys were degenerating and that my future held the prospect of dialysis, a transplant or death. Ultimately the future became the reality of two years of dialysis and then the gift of a living donor transplant. That’s why I urge you to speak out about a political game being played right now in Washington, D.C., over whether our nation’s method of distributing donated organs will be made better or worse.

I know the desperation that patients feel when life is put on hold because, through no fault of their own, an organ has failed. I know the hell of living as a listed patient. I know the frustration of waiting for my beeper to buzz, announcing a gift of life. I know the agony of having that beeper buzz--with a wrong number.

Among those who need transplants, people who need a kidney are considered lucky. First, we have dialysis--an unpleasant but life-sustaining procedure that uses machines or catheterized gravity flow devices to perform the kidneys’ normal function of filtering impurities out of the blood. This serves as a means, albeit a poor means, to live until an organ is available. Second, the human body has two kidneys. A living person can donate one, or a deceased person can provide a kidney for two people in need.

It is not easy to live with dialysis. It is a painful and inefficient way to remove toxic substances from your body. Every four hours I had to retreat to a closed room, scrub my hands with antibacterial soap, hook a bag of solution to a catheter in my abdomen and wait for an hour while it drained and refilled. Life became physically and emotionally harder than I had ever thought possible.

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The organ shortage facing our nation grows more critical daily. When my condition was diagnosed in 1989, there were 19,000 patients listed as needing an organ. Six years later, I was one of 44,000 people listed. Today, that number has increased to 68,000. Because the number of donations is much smaller than the demand, federal oversight is needed to ensure an equitable sharing of organs nationally. Otherwise, we face scenarios similar to the controversial decision to move baseball star Mickey Mantle, who needed a liver in 1995, to the top of the list over people who were sicker and who had a better chance of survival.

The Clinton administration recently implemented an organ sharing policy that would offer available organs to the sickest patients first on a national basis. On April 4, in a largely partisan 275-147 vote, the Republican-controlled House of Representatives instead approved a measure that would return to a policy of distributing organs to medically eligible patients in a local area first, in order of need, before offering them regionally and then nationally. This measure, sponsored by Rep. Michael Bilirakis (R-Fla.), is an example of industry desires taking precedence over human needs.

Since 1984, the United Network for Organ Sharing, or UNOS, has run an inequitable program of organ delivery under government contract. As a 1996 fellow in the office of Sen. Edward M. Kennedy (D-Mass.) I represented the senator at meetings where local, regional and national organ sharing were hotly debated. UNOS supported those medical centers that controlled organs the longest. Listening to these “experts” forced me to recognize where I fit into the transplantation scheme. I struggled to maintain a positive attitude. At best, it was difficult.

In 1999, Congress authorized the National Institutes of Health to study organ delivery. The study found serious inequity in the system.

There is no upside to waiting for a transplant. It’s even more difficult knowing your chances are greatly reduced based solely on residence. If the Bilirakis measure becomes law, a patient who doesn’t happen to live in an area of high organ donation would have to move to such an area to improve chances of getting an organ. Very few of us are wealthy enough to move to another region for a transplant.

The House measure does not serve the vast majority of patients listed. It is a bad piece of legislation that determines who can live and who can die based on locale.

Organ and tissue transplants are more successful today than ever before, thanks in part to new anti-rejection drugs. Old beliefs about sicker patients being poor candidates for transplants are no longer acceptable determinants of who gets donor organs. As a result, it is unethical to maintain UNOS’s current policies.

I hated dialysis. But it kept me alive until an organ was available. My brother Timothy is a hero. He gave me one of his kidneys in 1997.

I am lucky. I am that one out of four patients who receives the life-saving organ. The other three are not so lucky.

Please write your congressman and senators to voice your support for the administrations’ policy of offering transplant organs to the sickest patients first, regardless of their locale.

Therese Hughes lives in Newbury Park.