When Lack of Political Will Kills

More Americans have died waiting for a kidney than in the wars in Iraq, Afghanistan and Vietnam combined.

This is one of the few medical conditions where the death toll can be reduced by exercising political will, rather than chasing a scientific breakthrough. And unlike most diseases, the result will reduce, rather than expand, the amount of money spent by the US treasury.

Currently, more than 88,000 people in the U.S. are on the waiting list for a life-saving kidney transplant. Sixty-three percent of those on the waiting list are an ethnic minority. African-Americans, for instance, are represented at 2.6 times their rate in the population. Wait times for a kidney are as long as ten years in many parts of the United States.

A half-million more Americans are kept alive by dialysis, which requires some twenty to thirty hours a week on a machine that filters blood. The treatment leads to fatigue, depression, inability to concentrate and loss of ability to work. Dialysis is not a cure; A 55 year old on dialysis has a life expectancy of five years. As many has half of America’s dialysis patients would benefit from a kidney transplant, were the organs available.

25,000 transplants were performed in 2022. The percentage of deceased Americans who donate their organs is among the highest in the world. But deceased donors must be brain dead. With motorcycle helmet laws, better auto safety technology and advances in treatment for head trauma, the number of eligible deceased donors is decreasing.

The only answer to save lives is to increase the number of living donors. But in 1984, Congress passed legislation, sponsored by then Representative Al Gore, which banned any sort of incentives for donating organs. The National Organ Transplant Act (NOTA) is so restrictive that it inhibits the ability of donors to get reimbursed for expenses associated with the transplant – time off work, child care, travel and certain medical procedures. Not only are we asking for living donors to altruistically give up a kidney, we are asking them to take money from their own pocket.

During the debate on NOTA, Gore said that were altruistic donations insufficient, incentives to increase the number of living donors should be tried. However, more than 30 years and tens of thousands of preventable deaths after the passage of NOTA, altruism, by any measure, has failed. Yet the system stays the same. Americans are ready for reform. In 2015, a poll by the FAIR Foundation found that 61% of Americans favor financial incentives for kidney donation. An NPR poll in 2012 showed similar rates of support for incentives.

Yet virtually every effort to try incentives has been blocked. If the need is apparent, and public opinion supports change, why has NOTA not been reformed? The National Kidney Foundation (NKF), which bills itself as a patient advocacy group, is one of the primary obstructionists. The NKF is funded in large part by dialysis companies and other corporations benefiting from patients on dialysis. Dialysis is big money, and dialysis companies are well-connected in Washington. Dialysis is the only medical procedure for which Medicare pays regardless of the age of the patient. While dialysis patients make up only about one percent of Medicare’s population, end stage renal disease (ESRD) accounted for about 10% of Medicare’s budget in 2012.

In 2015, DaVita, the second largest and most politically active dialysis company, spent more on lobbying Congress than Goldman Sachs, Monsanto or Halliburton. When combined with Fresenius, the largest dialysis company, Big Dialysis spends more on lobbying Congress than every oil company save ExxonMobil, Koch Industries and Royal Dutch Shell.

Every day, 23 people die or become too sick for a transplant while waiting for a kidney. Every day, DaVita books about $38 million in revenues.

50 KIDNEYS A DAY ARE ILLEGALLY TRAFFICKED WORLDWIDE

CALIFORNIANS WANT IT STOPPED

64% of Californians want an elimination of the black market for kidneys.

CALIFORNIANS FAVOR THE CONCEPT OF COMPENSATION FOR KIDNEY DONORS BY 12 POINTS.

“A living kidney donor is a healthy person who voluntarily donates one of their kidneys to a sick person whose kidneys are both failing.

Do you agree or disagree with the following statement:

A living kidney donor who donates one of their kidneys to a kidney patient for a life-saving transplant surgery should be financially compensated for doing so.”

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YES

50 percent voted yes

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NO

38 percent voted no

CALIFORNIANS WANT KIDNEY DONORS TO BE MADE FINANCIALLY WHOLE FOR THEIR DONATION

63% want reimbursement to kidney donors for medical care not covered through other means

62% want reimbursement to kidney donors for lost wages

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61% want reimbursement to kidney donors for expenses they incurred during the process of donating a kidney

61% want reimbursement to the donor for travel and housing for medical appointments associated with the transplant

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55% want reimbursement for childcare for those donors who need it

53% want one-year term life insurance with a death benefit of $1 million to kidney donors

52% want to provide lifetime free access to Medi-Cal for kidney donors

INITIATIVE CAMPAIGNS IN CALIFORNIA ARE EXPENSIVE

$1.5 million just to qualify the initiative

A statewide media buy can be as much as $5 million

The Kidney Industrial Complex can put tens of millions of dollars in against this