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Right around the middle of June, I received an email from a friend, with a fundraising plea for a 20 year old girl called Madeeha. The email said that she was diagnosed with cardiomyopathy and needed a heart transplant, but due to her immigration status and lack of medical insurance, she was being denied placement on the list of transplant candidates. In a few hours I had about seven more emails from friends, and then over the next few days, our info@thesaturdaypost.com box started filling up with similar emails, being mass-mailed by different people and associations, with personalized pleas for generous donations to the family.
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Madeeha (left) with her mother, brother, and a visiting friend, at the INOVA Fairfax Hospital in VA
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As is sometimes the case with mass email requests for donations, there was some skepticism among recipients of these emails as well. Some people emailed us, asking if this was a genuine case or another internet phishing scheme, and if we knew more about Madeeha’s situation. We didn’t. To be very honest, that was a big reason why I decided to visit Madeeha at the INOVA Fairfax Hospital in Northern Virginia, and find out for myself the details of what was happening.
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Meeting with Madeeha and her family was as much an eye opening experience as it was emotionally overwhelming. Here’s this 20 year old girl, whose family is by her side, trying to overcome, well, death. Madeeha has restrictive cardiomyopathy, a group of disorders in which the heart chambers are unable to properly fill up with blood due to a stiffness of the heart muscle. The only treatment that will give Madeeha a chance of survival is a heart transplant. |
In order to receive a donated heart, Madeeha needs to be placed on a list managed by the United Network for Organ Sharing (UNOS). UNOS is managed by the Organ Procurement and Transplantation Network (OPTN). The way it works is that a heart transplant facility evaluates patients and recommends them for placement on the UNOS list. Once the patient is on the list, there is usually a long wait to find a matching organ. Right now, there are 2,957 patients on the UNOS list, waiting for a matching heart (based on OPTN data as of June 16, 2006). Wait times can run into months, or even years. There are no guarantees of if and when you will find a matching organ. Therefore, any delays in getting on this list simply add to the time you will have to wait for the actual transplant.
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Statistics indicate that heart transplant recipients have a survival rate at least in the 60-70% range, if not higher, depending on other social and physical factors
In order to receive a donated heart, Madeeha needs to be placed on a list managed by the United Network for Organ Sharing (UNOS)
It all boils down about 256 heart transplant facilities in the US to decide who gets on that list
Unfortunately, these facilities don’t always recommend patients for placement on the UNOS list based on medical factors alone
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So what’s the problem? Get on the UNOS list, right? Wrong. Nobody can enroll on the list directly. It all boils down about 256 heart transplant facilities in the US to decide who gets on that list. Unfortunately, these facilities don’t always recommend patients for placement on the UNOS list based on medical factors alone. In a story by ABC News, a bioethicist Laura Siminoff calls out the phenomenon of a “wallet biopsy”, where the patient’s ability to pay decides their recommendation for the UNOS list. Also, with some facilities, there are policy guidelines that factor in the candidate’s citizenship status before placing them on the list. |
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Madeeha loses the eligibility on both counts. Due to her lack of insurance and an undocumented immigration status, she is not qualified to be placed on the list of heart transplant candidates. She was turned away once by UVA in 2004. She is now being denied placement on the UNOS list for her undocumented immigration status and financial resources. |
Madeeha is not alone. On the one hand, she is one of several million uninsured Americans who have very little probability of being placed on the candidate list. Some studies indicate that while 1 in 4 donated hearts comes from an uninsured American, the ratio is much lower on the recipient side. On the other hand, she is an undocumented immigrant, which can be a factor in some heart transplant facilities rejecting her for placement on the list. |
While 1 in 4 donated hearts comes from an uninsured American, the ratio is much lower on the recipient side
180 out of the 2795 patients currently on the wait list have a "not reported" next to their citizenship/immigration status
(OPTN data as of 6/16/2006)
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The encouraging news is that as long as a facility recommends a patient, there is no explicit policy barring patients with an undocumented immigration status to be placed on UNOS itself (180 out of the 2795 patients currently on the wait list have a “not reported” next to their citizenship/immigration status). There is also precedence where undocumented residents have received organ transplants. Some facilities have even told Madeeha’s family that citizenship is not one of the factors they consider in UNOS eligibility. |
Hence, it apparently all boils down to money, at least where insurance is non-existent. The average cost of a heart transplant according to a study by the Battelle Institute/Seattle Research Center, runs from $50,000 to $287,000, averaging at $148,000. In researching the costs myself, I discovered that many heart transplant facilities actually spell out alternative fundraising avenues for patients who are uninsured or under-insured, indicating that funds are a major requirement for treatment. There’s no “discounts” but a simple, “Here’s other ways you can go arrange the money” attitude. There are financial advisors at heart transplant facilities who advise patients on contacting trust funds, campaigning for raising the money from the public, working with community service organizations, etc. for financing their transplant costs. Seems like the fees are important enough for hospitals to pay staff to counsel patients on fundraising! If I sound sarcastic, it is because I am. One would think that for illnesses so serious, where a treatment exists, there would at least be some consideration of making the treatment available to an average, middle class person. Apparently not |
The average cost of a heart transplant runs from $50,000 to $287,000, averaging at $148,000
There’s no “discounts” but a simple, “Here’s other ways you can go arrange the money” attitude
Madeeha's family is raising $150,000 to facilitate Madeeha's placement on the UNOS list
They are also searching relentlessly for facilities that will evaluate Madeeha and recommend her for placement on the UNOS list
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So, Madeeha’s family is doing everything they can to raise funds. They are also searching, relentlessly for facilities that will evaluate Madeeha and recommend her for placement on UNOS. INOVA Fairfax Hospital has declined to do so based on their policies. UVA has agreed to evaluate her.
The family has created a website called www.helpmadeeha.com with all of Madeeha’s case details and online options to donate to her transplant fund.
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So far, the family has collected approximately $80,000 and is aiming for a total of $150,000 – which incidentally may turn out to be only a part of the total cost they will have to bear.
The family has a record of all the donations made through the internet and by check, and if (God forbid), they end up not using these funds for Madeeha’s transplant, they plan to return the entire sum to the donors.
The portion that they received as cash donations and are not able to trace back to individual donors will be put to a charity cause, and one of the spokespersons for the family said they will even consult the public for choosing a cause to which they should donate.
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The family is keeping a record of all internet and check donations, to be returned to donors in case (God forbid) the funds are not used
Cash donations from unknown donors will be used for charity causes
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Can money buy health and happiness for Madeeha? Only time will tell. Only God and Madeeha know best what she is personally facing and suffering on a day to day basis. As observers, we can only see a very young girl, with a charming face, and a smile even as she waits for a verdict on how long her life may continue.
Madeeha has been a bright student all her life, excelling at academics, and has done nothing to deserve the situation she is in today.
I hope, as do all the people who’ve met her, that she will return to full health in a matter of time, and be able to live a long and happy, healthy life
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Meanwhile, please say a prayer for Madeeha and all of the patients who, for one reason or another, may not be able to get the treatment they need in order to survive, due to logistical or procedural issues.
When humanity advances further, I hope some thought will be given to making life accessible to all human beings, with equal opportunity.
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| For more information on Madeeha’s case, and to contribute to the funds being raised by her family, please visit www.helpmadeeha.com |
