good for you all to know.
The Politics of Organ Transplants
Transplants of major organs -- heart, kidney, liver, lungs -- will never be "no big deal"... there's always the risk of medical complications and, as it turns out, there are some complexities involved in who gets an organ and who doesn't. It remains a tremendous challenge to find a place among the lucky few to receive a donor organ in a timely fashion -- it's not just a matter of who needs what but also, sometimes, how to get selected to receive an organ when one becomes available. What do you need to do to be selected -- especially if you aren't a youngish, white male with a big bank account and great health insurance? I spoke with Benjamin Samstein, MD, assistant professor of surgery at Columbia University College of Physicians and Surgeons, to get the inside story on how to get to the top of the recipient list.
According to Dr. Samstein, the number of patients waiting for organs is growing, especially among people in their 50s, 60s and 70s who previously would not have been considered for transplant but now, due to medical advances, have become viable candidates. Therein lays one of the greatest problems. A decade ago, there were 53,167 patients on the waiting list. At the end of 2007, that figure rose to 97,670 -- an increase of nearly 84%. Meanwhile only 28,360 people received organ transplants in 2007 and more than 6,500 people died waiting. The longest list is for kidney donations, with 78,426 people waiting for a transplant, according to the United Network for Organ Sharing.
With so much demand, deciding who gets placed on the waiting list for organs has become a controversial topic. Researchers recently found that certain types of patients are less likely than others to have access to transplantation -- meaning either that they are not being referred for transplantation by their doctor or they are not receiving an organ because they failed to follow up on a referral. Researchers at the Johns Hopkins University found that older women are less likely to receive access to kidney transplants compared with older men -- with access reduced by 15% among women aged 56 to 65... 29% for women 66 to 75... and 59% for women over 75.
As for liver transplants, a study in the Journal of the American Medical Association found that while the current system has corrected an imbalance that made allocation unfair to blacks, women remain at a disadvantage. This is because the laboratory tests currently used seem to more accurately gauge severity of disease in men than women, resulting in the finding that women have a more than 30% greater chance of dying or becoming too sick for transplant with the current system than men.
And, perhaps unsurprisingly, few medical centers will provide organ transplantation for patients without financial resources or insurance.
HOW THE SYSTEM WORKS
Acknowledging that it is less than perfect, Dr. Samstein says the organ allocation system remains "one of the fairest and most advanced we have for the allocation of healthcare resources here in the US." A key component is the Scientific Registry of Transplant Recipients (SRTR), a national database that provides an overview of waiting lists, a breakdown of centers in the US that perform transplants, and transplant-specific data for each hospital, with information on various factors, including the overall institutional success rates. All transplant centers are required to inform potential recipients of this online resource and also to post their own transplant outcome data, in order to help patients make educated choices and also to ensure everyone has equal access to information about what's available.
WHAT CAN YOU DO?
Organ transplantation is one medical category where advocacy on behalf of the patient waiting for an organ is critical. If this is (or may become) an issue for you or a loved one, do all you can to make sure you are up to date on all treatment options, including different types of transplants (see below). Says Dr. Samstein, "There's urgency and a lot of anxiety when you're facing organ failure and it can be a very difficult time to be a selective consumer."
Ask your doctor to review all your options. First, consider multiple listings (having your name on lists in more than one center or area) and ask doctors to explain all options including extended criteria organs (such as organs from older people).
Get familiar with the SRTR. Log onto www.ustransplant.org, where you will see a section labeled "Information for Patients & Families." This helpful resource not only explains many of the issues facing potential organ recipients, it also explains how the organ allocation system works and tells how to get on a waiting list.
Be picky about who does your transplant and where. Choose a center with a successful track record in performing the surgery you require, along with good follow-up care. Remember it is not just the surgeon doing the transplant but the entire team you need to rely upon for excellence and experience. Ultimately, you should feel that you have a good bond with everyone who will be caring for you.
Consider alternatives to receiving a whole organ -- such as living donor transplants of kidneys and liver segments. According to Dr. Samstein, such options have enabled thousands of patients to be transplanted in recent years who might have died awaiting a donor organ. Often, in fact, living donor transplants may be preferable if they are a possibility -- waiting time is shorter and outcome and even survival are often improved, due to the fact that the organ is only out of the body for a short period of time and also that donors are well-screened for health problems. The disadvantage is that the donor must undergo a major operation, which may be risky. Another consideration is that living donors may have difficulty obtaining life, health or disability insurance after a donation. (Note: Transplant Living, www.transplantliving.org, provides comprehensive information on donating organs.)
Be an advocate. If you are aggressively looking for a donor organ among your family, friends and even co-workers, be vocal about your quest.
BEWARE OF TRANSPLANT TOURISM
Less advisable is pursuing "transplant tourism" as a means to get around the shortage of organs. This term refers to the growing practice of traveling to foreign countries, such as Pakistan, Egypt and the Philippines, where financially desperate people are willing to sell their body parts or, in some extreme cases, are forced to donate organs. Aside from the ethical issues involved, there are safety concerns for the recipient. "It's a dangerous adventure for any patient who's sick," says Dr. Samstein, who notes that in such cases the possibility you will receive a disease organ is quite real. He points out that here in the US, great effort goes toward testing donors for diseases, such as viruses, HIV and hepatitis, that could be transmitted with a transplant.
ON THE HORIZON
The future holds promise and amazing possibilities, as recent headlines have trumpeted innovative transplant operations: an ovary transplant followed by pregnancy, a double lung and kidney transplant, and even a face transplant here in the US. Other advances include longer-lasting organs... more tolerable immunosuppressant drugs... less invasive surgery for donors, expanding the number of people who receive transplants... and new preservation techniques to increase organ sharing throughout the country. It's no longer just about keeping patients alive. "Transplant surgery has moved from just saving lives to improving quality of life as well," notes Dr. Samstein.
Benjamin Samstein, MD, assistant professor of surgery, Columbia University College of Physicians and Surgeons.
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