Categories
Advocacy Living Donor Misinformation

Alabama Reporter Consults Wrong Living Donor “Expert”

Last month I ran across an article about a would-be recipient (who had already burned through two living kidney transplant) who was looking for a third. Not surprisingly (to me, anyway), the reporter got it wrong. So I sent her an email.

April 20, 2011
lisa.singleton-rickman@TimesDaily.com

Ms. Singleton-Rickman

I was recently forwarded the story you wrote on Jeff Malone’s search for a living kidney donor, and would like to comment on a few of its details.

1. Ms. Rich of the Alabama Kidney Foundation stated that a living donor ‘goes to the top of the list’ if s/he ever needs an organ. This is patently false. OPTN established a ‘four-point’ priority for living donors as defined in 3.5.11.6 of OPTN’s policies, found here: http://optn.transplant.hrsa.gov/PoliciesandBylaws2/policies/pdfs/policy_7.pdf

This policy only refers to local allocation and not national allocation, as do the priorities for pediatric patients and 6/6 antigen matched organs. It does NOT move a living donor to the ‘top’ of the list, but theoretically, can shorten wait time.

2. Ms. Rich also said that being a living donor ‘doesn’t cost a penny’. Again, she is incorrect. A recipient’s insurance is obligated to pay for evaluation, surgery and follow-up. However, it does not pay for travel, food, lodging, lost wages, child care or other expenses. There have been repeated incidents of a recipient’s insurance policy refusing to pay for a living donor’s complications, and it most certainly does not cover any mental health treatment required because of a living donor’s depression or PTSD.

3. While I’m glad that Jackie Whatley has remained healthy since her donation thirteen years ago, her experience is not generalizable to the entire living donor population. According to OPTN, 4.4 living kidney donors die each year in the US within 12 months of surgery. Many more experience debilitating complications: nerve damage, pancreatitis, chylous ascites, intestinal blockage, testicular swelling and sensitivity, adrenal dysfunction and more. As already stated, 20-30% experience depression, anxiety, anger and PTSD yet not a single transplant center offers support or aftercare services.

There is NO long-term data on living donors’ health and well-being. No one bothered to collect social security numbers until 1994 and there are no quality controls to know if they are correct. OPTN’s own living donor data task force in 2009 concluded that OPTN data was unreliable and invalid six-weeks post-donation. Only because of this four-point priority do we know that any prior living kidney donors have registered on the wait list in need of their own transplant. Unfortunately, not all LKDs know of this priority so the current statistic is not all inclusive. Studies conducted on LKDs with end-stage renal disease indicate its onset at approximately 20 years post-donation. In addition, even a 10% reduction in kidney function means a higher lifetime risk of hypertension, cardiac disease and death. A recent study found 55% of LKDs with hypertension a median 14 years post-donation, and another concluded that the loss of kidney translated into a 25% greater risk of cardiac death.

I am not unsympathetic to Mr. Malone’s situation, but if members of the media such as yourself are going to continue writing about living donation, it’s imperative to ascertain the facts so as to not mislead the public.

I couldn’t find Marty Rich’s contact info on the Alabama Kidney Foundation’s website so I sent an email to Mr. Rich Jackson, the executive director.

April 20. 2011
jack@alkidney.org

Mr. Jackson,

My attention was recently drawn to a Times Daily article regarding Jeff Malone’s search for a donor kidney, his third. In this article, Ms. Marty Rich, identified as the ‘head’ of the Shoals Chapter of the Alabama Kidney Foundation, is quoted as saying, “It [the donation] doesn’t cost the donor a penny.” She is completely incorrect. A recipient’s insurance is obligated to pay for evaluation, surgery and follow-up. However, it does not pay for travel, food, lodging, lost wages, child care or other expenses. There have been repeated incidents of a recipient’s insurance policy refusing to pay for a living donor’s complications entirely, over a certain amount, or only within a certain time frame. They most certainly do not cover any mental health treatment required because of a living donor’s depression or PTSD, which affects 20-30% of all living organ donors.

Ms. Rich also stated that a living donor ‘goes to the top of the list’ if s/he ever needs an organ. This is patently false. OPTN established a ‘four-point’ priority for living donors as defined in 3.5.11.6 of OPTN’s policies, found here: http://optn.transplant.hrsa.gov/PoliciesandBylaws2/policies/pdfs/policy_7.pdf This policy only refers to local allocation and not national allocation, as do the priorities for pediatric patients and 6/6 antigen matched organs. It does NOT move a living donor to the ‘top’ of the list, but theoretically, can shorten wait time. How much is determined by the region where the living donor is registered.

If representatives of your organization are to be quoted in the media, it’s important they be given the facts. Misleading statements will only erode the public’s trust in the transplant system and cause organ donation to further decline. I would’ve contacted Ms. Rich directly with these comments, but her information is not available on your website.

I trust you will correct these misconceptions with Ms. Rich and Ms. Singleton-Rickman at the Daily Times as soon as possible.

I’m posting both these missives now because neither bothered to even acknowledge my existence. So much for journalistic and organizational integrity.

Add Your Thoughts