Transplants, Waiting Periods, Insurance Gods, O My

Dying for a transplant
John Stucke
Staff writer
March 26, 2008

Fred Watley is missing his chance for a liver transplant.

A new organ may have helped the 59-year-old substance abuse counselor steer more teens away from drugs and booze; may have helped him raise his 10-year-old son into a young man; may have helped him grow old with LiAnne, his wife of 11 years. . . .

I was dismayed when I read this article in the Spokesman Wednesday morning. The intertwining of transplants and health insurance coverage is a sticky subject. It is beyond comprehension that the government would support waiting periods for insurance companies on transplants. I can hear their little wheels turning: "gee, if we have a waiting period of six months, the chances are good the patient will die before we have to fork money out for a transplant."

Not only do potential transplant recipients have to go through their insurance company's waiting period, then if they are fortunate enough to get a match with a new organ, they have to go through the surgery, and once home, they have to jump through the Medicare hoops for post-transplant care which includes the very expensive anti-rejection drugs a transplant recipient must take for the rest of his or her life. The catch here is that Medicare will cover an organ transplant for only three years – not for the lifetime of the organ recipient. Again, the governmental mumblings can be heard, saying, "well, we only expect the transplant recipient to live an additional three years, once they have received the new organ. Then they die." So the recipient finds themselves in a position three years after having a successful transplant of paying $3,000 to $5,000 a month for the drugs they must take to keep their organ viable.

It's a matter of life and death. With a transplant, Mr. Watley would have a chance of living 20 years or more. (The down side of transplants is that the new organ will start to fade out after 20 years.) Now he isn't even going to make the six month waiting period.

I have a familial kidney disease, Polycystic Kidney Disease (PKD), which is the most common genetic disease even above diabetes, however the public is much more aware of diabetes than PKD. April is Organ Donor Month. We are hearing ads all the time to encourage people to list themselves as organ donors on their driver's license. Just recently we read about a customer at a Starbuck's in Seattle getting a new kidney from her barrister. Her disease: Polycystic Kidney Disease.

My sister had a transplant eight years ago from a live donor; my brother had a transplant two years ago from a person who had an organ donor card. Both are alive and active and productive. Both were "lucky" in that they lived through the waiting period. My sister was let go from her job (ironically in a transplant center in Seattle) because she was out sick a lot. The problem is that transplant recipients not only have to take 10-20 pills every day to keep from rejecting their new organ, but their built-in immunity is wiped out and they are susceptible to anyone's common cold or flu or other contagious disease and it negatively impacts the organ recipient. She went on Medicare but only received three years of coverage. Being well under 65, she couldn't qualify for Medicaid coverage until her and her husband's income was down to a minimum ($40,000 for a married couple, $2,000 for a single person). My brother is self employed while his wife has excellent insurance coverage for the two of them – so he has a double-sided "good luck" coin: he has insurance through his wife, and, he works alone so he isn't bombarded by sniffles, coughs, wheezes and the cubicle neighbor who has to confide to anyone in breathing-in distance their blow-by-blow latest crud.

As for me, I am living on the hope that I am "status quo" and that I can live to old, old age with no problems with this disease. My alternative is dialysis – even Mr. Watley hasn't had that option. Or a transplant.

Have a spare kidney??????