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Entries in Review (3)

Sunday
Jun022013

Sebelius Seeks Review of Organ Allocation

Photo By Tom Williams/Roll Call(WASHINGTON) -- Health and Human Services' Secretary Katheen Sebelius has called for a review of policies affecting children awaiting lung transplants, as the parents of a 10-year-old Pennsylvania girl fight for their daughter to be granted the care they said she has been denied because of her age.

If Sarah Murnaghan were 12 years old, she would be at the top of the adult lung transplant list because she only has weeks to live and a lung transplant would as-good-as cure her of cystic fibrosis.

But she's not 12, and if she doesn't get new lungs, she might not even make it to 11.

The Murnaghan family of Newtown Square, Pa., is fighting a little known organ transplant policy that is effectively pushing 10-year-old Sarah to the bottom of the adult transplant waiting list because it mandates that adult lungs be offered to all adult patients before they can be offered to someone under 12 years old.

"We are not asking for preference for Sarah, we are asking for equality," Sarah's mother, Janet Murnaghan, said in a press release. "We strongly believe Sarah should be triaged based on the severity of her illness, not her age."

Under the existing policy, children like Sarah are forced to wait for a lung transplant, despite her life-threatening illness.

According to the Philadelphia Inquirer, Sebelius asked the Organ Procurement and Transplantation Network to reconsider existing rules governing lung transplant allocation. Additionally, she is seeking "new approaches for promoting pediatric and adolescent organ donation."

Sarah has been on the pediatric waiting list for new lungs for 18 months, but since there are so few pediatric organ donors, there hasn't been a match. She's been living at Philadelphia Children's Hospital for two months connected to a machine to help her breath, Sarah's aunt, Sharon Ruddock, told ABC News.

There were only 11 lung donors between 6 and 10 years old and only two lung transplants in that age group in 2012, according to an Organ Procurement and Transplantation Network statement.

However, since Sarah was eligible for an adult lung transplant, her family was both horrified and excited when her condition rapidly deteriorated earlier this month because they thought it meant she would get bumped to the top of the adult waiting list, Ruddock said.

"A week went by with nothing, no offers," Ruddock said. "They said, 'Well, you're not at the front of the line. It goes to all adults, and if all the adults turn them down, the lungs go to the kids.'"

Patients with cystic fibrosis, a genetic condition that damages the lungs, have an average life expectancy of 31 years old, said Dr. Devang Doshi, a pediatric lung specialist at Beaumont Children's Hospital in Michigan who has not met Sarah. But if they get a lung transplant, the condition is essentially cured.

"It's a very disheartening thing to hear and read about because you've got a child in desperate need of a transplant to survive ... and people less qualified in terms of severity are able to get that organ instead of this child because of what's in place," Doshi said. "From a medical standpoint, we look at these types of hurdles and obstacles and sometimes get frustrated with the system."

So Sarah's family started an online petition at Change.org to persuade the Organ Procurement and Transplantation Network to change its policy. So far, they've gathered about 40,000 signatures.

The organization, which falls under the U.S. Department of Health and Human Services, responded on Monday that it can't make an exception for Sarah.

"OPTN cannot create a policy exemption on behalf of an individual patient, since giving an advantage to one patient may unduly disadvantage others," the statement read.

Doshi said he thinks children under 12 years old should be considered with the adult patients and awarded organs based on how severe their conditions are. Adult lungs may not perfectly fit child patients, but they can be used to save multiple children. One of his 6-year-old patients' got a partial lung donation from her mother several years ago in a last ditch effort to save her life.

Although adults make up the majority of the lung transplant waiting list, NYU Langone Medical Center's head bioethicist Art Caplan said children should be given priority if they're sicker than those adults, in part because children should be able to get more healthy years out of the lungs than adults.

"At the end of the day it's not so simple as kids versus adults," Caplan said, adding that chances of survival with the new organ and many other issues factor into the decision. "I think, however, there is a case that would say ... most Americans -- as donors -- would want to give priority to children." Doshi also said he thought that most adults would agree children should come first.

Sarah, who dreams of being a singer and a veterinarian, told her parents she wanted to fight for her life but not know how dire her situation was. However, Ruddock said she probably knows anyway. She lost her hearing a few weeks ago as a side effect of one of the antibiotics keeping her alive. At bedtime, she now asks her parents if she'll wake up.

Last Monday, Sarah's siblings and cousins gathered to say goodbye even though their parents didn't say that's what was going on, Ruddock said. On Friday, doctors told the family that they weren't sure Sarah would survive Memorial Day Weekend, but she pulled through.

"She was the little leader in our family. She would always get the little kids to put on a play for us," Ruddock said. "She's a bit of a pistol with a good personality to survive. She's not meek. She's a tough kid."

Copyright 2013 ABC News Radio

Tuesday
Nov302010

Pentagon: 'Don't Ask, Don't Tell' Repeal Not a Threat

Photo Courtesy - Getty Images(WASHINGTON) -- Repealing the "don't ask, don't tell" policy that bans gays and lesbians from serving openly in the military is unlikely to hurt the effectiveness of U.S. troops, according to a Pentagon review released Tuesday.

The report includes interviews with former service members who are gay or lesbian, including those who were discharged from the military under the "don't ask, don't tell" policy, and 44,266 spouses. Of those surveyed, 69 percent said they had served with a gay service member and 92 percent of those respondents said they were able to work together. Fifty to 55 percent of those surveyed said the repeal won't have any effect, 15-20 percent said it would have a positive effect and 30 percent said it would be negative.

The report also concluded that encounters with gay service members are common.

"The reality is that there are gay men and lesbians already serving in today's U.S. military and most service members recognize this," the report states.

Defense Secretary Robert Gates said Tuesday the military will need some time to prepare for a repeal.

Gates convened the Comprehensive Review Working Group earlier this year to determine how the Defense Department might implement a repeal of the 1993 law.

The controversial law has been reconsidered politically, by legislation in Congress as well as constitutionally by federal courts, in recent months.

In September, legislation to repeal "don't ask, don't tell" failed in the Senate when Democrats fell one vote short of the 60 votes needed to advance the bill.

The House has already approved a conditional repeal of "don't ask, don't tell."

More than 75 percent of Americans believe gays should be allowed to serve openly in the military, a support rate higher than at any other time since the policy took effect in 1993, according to the most recent ABC News/Washington Post poll.

Copyright 2010 ABC News Radio

Tuesday
Nov302010

Pentagon's Review of 'Don't Ask, Don't Tell' to Be Released

Photo Courtesy - Getty Images(WASHINGTON) -- The Pentagon's review of the "don't ask, don't tell" policy that has banned gays and lesbians from serving openly in the military will be released Tuesday.

Defense Secretary Robert Gates convened the Comprehensive Review Working Group earlier this year to determine how the Defense Department might implement a repeal of the 1993 law.

The controversial law has been reconsidered politically, by legislation in Congress, as well as constitutionally, by federal courts, in recent months.

The House has already approved a conditional repeal of "don't ask, don't tell."

More than 75 percent of Americans believe gays should be allowed to serve openly in the military, a support rate higher than at any other time since the policy took effect in 1993, according to the most recent ABC News/Washington Post poll.

Copyright 2010 ABC News Radio







ABC News Radio