SSDI Available for Cystic Fibrosis, Lung Transplant Patients

July 1, 2013

Out of one tragedy came the gift of life.

When a 10-year-old girl was transplanted with the lungs of a recently-deceased adult, she was given the chance to live - and raised numerous questions about the ethics of ushering children to the front of the line, ahead of adults, for organ transplants.
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In fact, the decision in her case came only after a massive online petition campaign, followed by the order of a federal judge.

Our Los Angeles Social Security Disability Insurance Lawyers know that the condition that ravaged this young girl's own lungs, cystic fibrosis, affects some 30,000 children and adults in the U.S. It is caused by a defective gene and its protein byproduct that causes the body to produce a sticky, thick mucus that clogs the lungs and causes life-threatening infections.

Most children who had it didn't live past the age of 8. Today, these individuals can be expected to live well into their 40s and beyond. However, the condition often worsens in adulthood.

Cystic fibrosis is listed in Section 3.04 of the Social Security Administration's disability listings. Lung transplants are listed in Section 3.11 of the SSA's disability listings. For the former, patients either need to display a certain threshold of poor breathing ability, pulmonary exacerbations or chronic infections. For the later, one can automatically receive disability benefits for up to one year after surgery, with evaluations continuing after that one-year mark.

The case of this young girl may ultimately define who gets another chance at life and who doesn't. The sad reality is, not everyone will receive a necessary transplant before the underlying disease claims another life. The question is, how should we determine who has priority.

Federal transplant officials were upset by the fact that in the case of this 10-year-old girl, the courts had intervened with their organ allocation system. In response, the United Network for Organ Sharing rejected an emergency rule that would have given top priority to all children in need of new lungs. Rather, officials said hospitals may petition the board regarding individual cases while the board takes the next year to more closely study the issue.

Prior to 2005, all patients waiting for lines, regardless of their age, were treated on a first-come, first-serve basis. However, adult organs usually ended up going to adult recipients because they were generally too large for children.

The way it works now is that children under the age of 12 are first in line for lungs of donors their own age and second for lungs belonging to adolescent donors between the ages of 12 and 17, just behind members of that age group. Children may only have access to adult lungs if there are no adults who are suitable recipients, which almost never happens.

Adolescents are eligible for adult lungs too, though they have preference from donors their own age.

Other than this, the national center takes into account a person's place in line, as well as the severity of the condition and the likelihood that a surgery will be successful.

This system has reportedly driven down the rate of death among recipients, but it also raises questions about whether children are being inequitably denied access.

Of course, another question that arises is this: While no one wants a child to die and most might argue for a child to be given priority, should he or see receive more access than a young adult who has three children and is the sole provider for his or her family?

Organ donation is a zero-sum game in the sense that, because there are never enough to go around, someone will always sadly end up being denied. While officials work to sort out these deeply confounding legal and ethical dilemmas, adults who are on the transplant list should immediately consult with an experienced SSDI attorney.

Los Angeles Disability Benefits Attorney VINCENT HOWARD at HOWARD LAW can help. Call toll-free at 1-800-872-5925 or send us a message online.

Additional Resources:
Girl's lung transplant leaves thorny ethical questions, June 13, 2013, By Alan Zarembo, Los Angeles Times

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