Hope for Those Awaiting Organs

White House Takes Aim at Organ Waiting List

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Currently, there are more than 120,000 Americans in need of organ transplants. An estimated 22 people die each day while waiting for an organ. As with many other parts of the world, the United States is facing a dire shortage of organs for transplant. Thus, increasing the number of organ donations has become a national priority.

In 2016, the Obama administration announced new plans that not only take aim at the shortage of organ donations but also provide support for people who donate organs, or living donors.

In this article, we’ll take a closer look at these plans to boost organ availability as well as novel incentives provided to people who commit to organ donation in other countries like Israel.

A Few Words About Organ Transplantation

Organ transplantation was once a risky and experimental procedure. However, with advances in medicine, we’ve been able to successfully transplant organs in people who have end-stage organ disease, wherein the organ eventually stops functioning altogether. When a vital organ, like the kidney, liver, heart or lungs stops functioning, death follows.

Here’s a list of organ transplants in descending order of frequency:

  • kidney
  • liver
  • heart
  • lungs
  • pancreas
  • intestines

Of note, tissues, like the cornea, bone, skin, fascia, sphenoid veins and heart valves, can also be transplanted.

Both kidney and partial liver transplantations can be procured from a living donor. Other organs, like the heart and lungs, come from a recently deceased donor.

More specifically, a person can live with just one kidney and thus donate the other. Furthermore, a person with a healthy liver can donate a portion of her liver and the liver will regenerate. People who donate organs while alive are called living donors.

Organ donations often come from patients who are hospitalized and die from stroke or injury.

The Joint Commission, which accredits and certifies health-care institutions nationwide, requires that physicians in the emergency department contact organ-procuring agencies about all deaths that occur in the emergency department. In other words, such organ-procurement agencies must be notified of the potential that there may be available organs for transplant.

Family consent is the single biggest obstacle to the procurement of organs for transplant. Typically, if a family initially reacts positively to the idea of donation, then the chances that donation will take place are better. Moreover, if the deceased has indicated a preference for organ donation by consenting and registering with the Department of Motor Vehicles (DMV), then family members are more likely to consent, too.

If the family disagrees with the deceased person's wishes to donate organs, trained organ-procurement specialists with expertise in this specific type of conflict resolution are called in. These specialists are versed in state laws regarding organ donation and procurement and can facilitate decision making.

If you plan to donate your organs and have registered to do so, it’s a good idea to inform other immediate family members of this intention. Doing so will help resolve confusion and fallout among family members in the event of your death and better ensure that your wishes are honored.

Improving Organ Transplantation Rates

Although 95 percent of all Americans support organ donation in principle, only 50 percent of Americans are registered to be organ donors. In conjunction with various universities, hospitals, companies, foundations and patient advocacy organizations, the federal government aims to shore up this discrepancy.

In the aggregate, $200 million will be donated for research efforts focused on breakthrough research and development involving organ transplantation. In 2016, the Obama administration predicted that these efforts would increase the number of donations by 2,000 per year.

Here are some plans laid out by the Obama Administration to improve and increase organ donation in the United States as well as reduce the organ waiting list:

  • Increasing Efficiencies on a National Level. The United Network for Organ Sharing (UNOS), the nation’s Organ Procurement and Transplant Network, plans to increase efficiencies in the organ procurement and transplant system. UNOS also plans to make new data and technology available to transplant centers and researchers.
  • Harnessing the Power of Social Media. Facebook, Tinder, Twitter, ORGANIZE and several other organizations are developing new tools to enable potential donors to register more easily. These organizations are also using social media to disseminate public advocacy campaigns geared towards young people.  ORGANIZE is a non-profit that created the first central registry. Currently, every state has its own organ registry. However, when people move, their organ donation status is lost in the shuffle. ORGANIZE fixes this problem with its central registry that exists independent of a state registry—a central registry that any organ procurement organization can use to search for donors.
  • Organ and Tissue Biofabrication. The Department of Defense (DOD) is dedicating $160 million of public-private money to create the Advanced Tissue Biofabrication Manufacturing Innovation Institute. This institute will develop manufacturing technologies that will enable the repair and replacement of cells and tissues. This technology could someday be used to create organs for transplant. Furthermore, the DOD is also earmarking $7 million in awards to small businesses that are trying to improve organ and tissue preservation.
  • Kidney Diseases XPRIZE. The American Society of Nephrology is putting up an initial $7 million to develop a Kidney Disease XPRIZE. According to its website, the XPRIZE is “a highly leveraged, incentivized prize competition that pushes the limits of what’s possible—to change the world for the better.”
  • Improving Outcomes From Liver Transplantation. The Cystic Fibrosis Foundation will fund $15 million towards research that improves outcomes after lung transplantation
  • Kidney-Paired Donations. Walter Reed Bethesda is building on the “military share program,” which pairs families of active service military with patients at Walter Reed who are in need of a kidney and are hard to match. On a related note, more than 30 institutions are collaborating to share data and best practices for kidney transplants in hard-to-match recipients.
  • HIV-positive Organ Transplants. Johns Hopkins University and the National Institute of Allergy and Infectious Disease are creating a multicenter study that will research organ donation among people who are HIV-positive as well as protocols to use an HIV-positive donor pool.

Incentivized Organ Donation

In Israel, a small minority of people donate organs. To combat this organ shortage, on March 31, 2008, the Israeli parliament passed a law that prioritized organ donation for the following groups of people:

  • People who register as organ donors by signing a donor card
  • First-degree relatives of deceased organ donors
  • Living donors

Legislation that incentivizes organ donation and thus provides nonmedical priority to select individuals is a novel approach to the organ shortage problem. Before Israel passed a law to incentivize organ donation, only Singapore had enacted such legislation that grants priority based on organ registration status. On a related note, in the years since Israel passed such legislation, Chile has also enacted legislation to prioritize family members of deceased organ donors.

It took four years for this new law incentivizing organ donation to take effect. During this time, allocation policies and logistics were hammered out by the Israeli government. Furthermore, during this interim period, the Israeli government held advocacy end education campaigns concerning this new organ donation policy.

On April 1, 2012, this new legislation took effect. People who signed up to be organ donors before this date were eligible for priority organ recipient status beginning on this date. People who registered after this date had to wait three years to receive priority. This three-year waiting period was designed to discourage people from signing up to be an organ donor only after they had been diagnosed with a condition that would require organ transplant.

In a 2016 article published in Health Economics, Stoler and colleagues used organ-donor registration data to figure out in part whether the new policy to incentivize organ donations worked. According to the authors of this study:

  • The new policy granting priority to registered organ donors worked and “substantially” increased organ registration numbers.
  • Lots of people registered just before the law took effect on April 1, 2012, which makes sense because people who registered after this date had to wait three years to receive priority status.
  • Public awareness campaigns aimed to introduce this policy of incentivized organ donor registration.
  • Making it easier to register using either telephone or online methods also increased organ donation.

The results of this study are encouraging with respect to the efficacy of providing incentives to registered organ donors. However, this study does have its limitations. The results of this study show only an association between the enactment of this policy and increased organ-donor registration. In other words, there is no direct cause-and-effect relationship between the enactment of such policy and an increase in organ donor registration.

Other factors, like public education campaigns and increased ease of registration (by telephone or the internet) could have also contributed to increases in organ donation. Because this study is retrospective and without a control group, it’s hard to specifically elucidate the individual effect of this new organ incentivization policy on organ-donation rates.

According to experts responding to results of this study, the design of the Israeli law granting priority to people who register as organ donors has a couple of major flaws. Specifically, next of kin can reverse a register donor’s wish to donate organs after the person dies. Alternatively, “fake” registrations could also occur wherein a person registers to become an organ donor to receive priority while alive however instructs first of kin to reverse this decision after death. According to these experts, the only way to prevent reversals and “fake” organ donor registrations is to revise policy to make it so that first of kin can’t stymie the organ donation process and refuse to authorize donation.

Conclusion

According to the experts, organ incentivization akin to what happens in Israel probably wouldn’t work well in the United States because the United States is different in many ways from Israel. Furthermore, although many Americans are in need of organs, the United States is relatively “organ rich” when compared with Israel.

Nevertheless, if you or a loved one is currently in need of an organ or anticipates future need of an organ (living with end-organ failure), new initiatives set in motion by the Obama administration should provide hope. Although it may take some time for these measures to take effect, they will likely boost organ availability in the United States by increasing donor rates, improving logistics and removing some of the “decentives” like cost and monetary loss experienced by living donors.

On a final note,  if you are interested in becoming an organ donor, please note that in addition to registering as a donor with your state’s DMV you can also register online at sites like ORGANIZE and  organdonor.gov, which is hosted by the U.S. Department of Health & Human Services.

Sources:

Weaver L, Hobgood C. Death Notification and Advance Directives. In: Tintinalli JE, Stapczynski J, Ma O, Yealy DM, Meckler GD, Cline DM. eds. Tintinalli’s Emergency Medicine: A Comprehensive Study Guide, 8e. New York, NY: McGraw-Hill; 2016. http://accessmedicine.mhmedical.com.proxygw.wrlc.org/content.aspx?bookid=1658&Sectionid=109449064. 

Goldberg DS, Trotter JD. The Gift that Keeps on Giving: Increasing Donation Rates by Offering Incentives. American Journal of Transplantation 2016.

Organ Donation Depends on Trust [editorial]. The Lancet 2016.

Stoler A et al. Incentivizing Organ Donor Registrations with Organ Allocation Priority. Health Economics 2016; 387: 2575.

Saving Lives and Giving Hope by Reducing the Organ Waiting List. Whitehouse.gov

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