may easily and quickly raise $750,000 for Jessyca Claros by seeing that BCG is available to all those who wish same. See eg faustmanlab.org and pubmed.org faustman dl. We should not have to travel to Honduras to receive BCG which Jessyca Claro received as a childhood immunization.
Newsday failed to describe the cause of Ms. Claros' pulmonary fibrosis nor detail her exposure, if any, to pathogens (bacteria, viruses etc) or environmental factors such as exposure to chemical or smoking.
I would be glad to receive BCG at the Medical Center and send the Medical Center an endless supply of paying customers for BCG, an inexpensive vaccine used all over the world. The Medical Center could then use the profit to fund Jessyca Claros' desired wish. While others might disagree with her choice, it should be her choice to make just as those who suffer in Nassau County should not have to travel to Honduras to receive BCG.
Delthia Ricks, the Medical Reporter, for Newsday sent a photographer to my house for a story about my search for BCG that she said she would write.
Westbury woman needs $750G for lung transplant
Jessyca Claros, 25, of Westbury, who is diagnosed
with a fatal lung disease, can't get a lung transplant she needs to
survive because of a lack of insurance and income. Videojournalist:
Alejandra Villa (March 27, 2013)
Jessyca Claros is praying for new lungs.
The 25-year-old from Westbury suffers
from a progressive, incurable and deadly lung disease called pulmonary
fibrosis in which lung tissue turns into scar tissue. Her pulmonologist
said she has from "a few months to a few years" to live unless she gets a
lung transplant.
But the young woman, who comes from Honduras, entered the
United States without documents and has no health insurance. She said that NewYork-Presbyterian Hospital /
Columbia University
Medical Center in Manhattan, the only lung transplant center in the
state, told her that she must deposit $750,000 -- $500,000 to pay for
hospital costs and $250,000 to cover the doctors -- before she can be
evaluated to see if she should be put on the center's lung transplant
waiting list.
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The cost is an insurmountable sum for a woman who
earned her living as a factory worker or cleaning houses before she
became too ill to work.
"The medical answer is a lung transplantation," said Dr. Steven Walerstein, chief medical officer of
Nassau University Medical Center in
East Meadow,
where she has been treated for the past year. "We have facilitated that
with a referral to Columbia. She has hit a dead end; I'm not sure what
else we can do."
Columbia Presbyterian declined to comment about Claros'
case or about its lung transplant program, the sixth largest in the country.
Experts said Claros'
case
exemplifies the complex issues, including the role of money,
surrounding the allocation of scarce and valuable organs. There are
1,677 people waiting to get lungs nationwide, and the median time to
receive a transplant is 132 days, according to data from the national
Organ Procurement and Transplantation Network, administered by the
United Network for Organ Sharing under a federal contract.
Under federal guidelines, once a
person is on a waiting list to receive a transplant, the center cannot
discriminate in organ allocation based on a candidate's residency status
or financial means. But each transplant center -- 64 centers performed
lung transplants last year -- can decide who it will put on its waiting
list. This is where money, far more than citizenship, counts, experts
said.
"The first and most important test is the wallet biopsy," said Arthur Caplan, a bioethicist at
NYU Langone Medical Center in Manhattan. "The issue of who is paying is the first one you encounter."
Getting on list biggest step
Once a person is on the list, blood
type, severity of disease, age and other factors can determine who gets a
transplant. "Once you're in, the system is pretty good," Caplan said.
But getting on the list is the biggest hurdle, he said.
"If you're not listed, you're not getting an organ," said Jeffrey Kahn, a bioethicist at
Johns Hopkins University in
Baltimore. And money is "unfortunately an important issue."
Paying for a transplant is difficult
even for those with health insurance, said Emily Joyner, a spokeswoman
for the National Foundation for Transplants in Memphis, which helps
people raise money to cover transplant costs. Of the more than 1,000
people the foundation is working with now, the "vast majority" have some
form of health insurance that doesn't cover their transplant costs, she
said.
A single lung transplant -- including
pretesting, procurement of the organ, the hospital stay, the doctors,
six months of follow-up and six months of immune-suppressing drugs --
costs about $561,200, according to a 2011 report by the actuarial firm
Milliman Inc. For two lungs, the price is $797,300. By comparison, the
average cost of coronary bypass surgery is less than a tenth of that, or
$73,420, according to a 2012 report by the International Federation of
Health Plans.
And then there is the cost of
immune-suppressing drugs that a transplant recipient must take for the
rest of his or her life to keep the body from rejecting the organ.
According to the Milliman report, just six months of immune-suppressing
drugs is $23,700 for one lung and $28,200 for two.
For the "gatekeepers" who have to make
the decisions about who gets on the list and who doesn't, ensuring
someone will be a "good steward" of the organ is important, Kahn said.
Making sure that someone has the ability -- including the money -- to
get the appropriate care before and after the transplant is key, he
said.
"I have two roles. One is to the recipient and the other is to the donor family," said Dr. Marie Budev, medical director of
Cleveland Clinic's lung and heart-lung transplant program.
Cleveland Clinic,
which transplanted 100 lungs last year compared with Columbia's 67, has
the third-largest lung transplant program in the country. "If I'm going
to take a loved one's organ, I have to give it to the person with the
best chance of survival and chance for taking their medications and
having access to good medical care," Budev said.
Low survival rate
Lung transplants are among the most
difficult, with a survival rate lower than most other transplants. That
is because of the constant risk of infection from breathing potential
infectious agents into a compromised immune system, Budev said. The
five-year survival rate for those 18-34 years old is 49.6 percent; for
kidneys it is 93.8 percent, according to
United Network for Organ Sharing.
"The care is so intense, it's so
complex that no matter what you do, it's very pricey," Budev said. She
said a hospital "can eat" some of the costs but not all, and her program
steers families to groups like the National Foundation for Transplants
to help them muster the needed funds. "There are ways to raise money,"
she said. "Americans are very generous when they hear stories of
individuals."
Budev and Kahn said Claros'
immigration status is less of an impediment than her poverty. Kahn
pointed out that more "non-U.S. citizens who lived in the U.S." (as
opposed to resident aliens) donated organs than received them. In 2012,
2.9 percent of organ donors were in this category, yet only about 1
percent of transplant recipients were, according to the
United Network for Organ Sharing.
Dr. Edward Halperin, chancellor of
New York
Medical College in Valhalla, said the issue is part of a larger problem
of "cost-shifting" in hospitals, which are required to provide care for
the uninsured or underinsured without appropriate reimbursement and
often offset those costs with expensive procedures.
"Organ transplants . . . are canaries in the mine of the problem of poor reimbursement for the uninsured," he said.
It's also emblematic of a society that
hasn't fully decided how it wants to take care of its most vulnerable,
he said. Referring to Claros, he said: "Would we let someone hold a
revolver to her head or would we let her die of starvation or of an
infectious disease? If we spent a million dollars on her, does that mean
we're not going to fund women and children's programs or mop the floor
or turn on the lights? The U.S. has been having this conversation since
1912."
Kahn agreed. Health care for people
living in the country illegally is part of the debate "we should have
had" before passage of the Affordable Care Act three years ago. Under
the new health act, the country's estimated 11.5 million people without
documents will not be offered any form of health insurance.
Multiple hospital stays
For Claros and her doctors at NUMC,
the concerns are more immediate. Diagnosed last July -- a year after she
arrived in this country -- she has been in and out of NUMC a half-dozen
times since then. She spends most of her days now hooked up to an
oxygen machine watching Spanish soap operas and studying English in her
tidy bedroom decorated with religious pictures and soccer posters.
Her pulmonologist at NUMC, Dr. Artur
Alaverdian, said Claros' pulmonary fibrosis -- the cause of which is
unknown and typically found in someone older than 50 -- is "probably the
most severe
case I've seen."
"A lung transplant is her only
long-term option," he said. "She is a very good candidate because she is
very young, has very severe disease and there is nothing else wrong
with her."
As to whether she would need one lung or two, that would depend on a transplant center's evaluation, he said.
Dr. Lambros George Angus, a surgeon at
NUMC who cared for Claros during her most recent hospital stay, said he
was frustrated by a system that places money above saving a life.
"At the very least, she needs an evaluation," he said. "I can't believe in America we can't find a way to help this young lady."
As for Claros, she said she is praying
someone, somewhere will step forward. "If anyone can find it in their
heart, I need their help right now," she said in Spanish. "I need my two
lungs."
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