You don’t usually expect to see a picture of your ex-girlfriend from high school on the front page of the paper; you really don’t expect the headline next to her photo to read, “Is $300K the price tag of a 21-year-old?”
Through the article in the Daily Hampshire Gazette, I found out that University of Massachusetts senior Hannah Coler is suffering from a “potentially deadly autoimmune disease.”
The problem is that her insurance does not cover the stem cell treatment that is covered by some other insurance companies. She is covered under the company UniCare. The treatment is estimated to cost $300,000.
Her father now has to try to figure out how to gain enough media attention to get the treatment for his daughter. He has reached the point where he is asking for donations to raise the money for the procedure himself. According to the Gazette, he is thinking about suing UniCare but, with the possibility of litigation being drawn out, he is worried there won’t be enough time.
Hannah’s disease is described as progressing rapidly and she has a fifty-fifty chance of surviving the next five years. The disease, called diffuse scleroderma, makes the skin harder and then moves its way to the internal organs, hardening them as well.
The Gazette mentioned the attorney who is helping the Coler family, David Becker, who had the same disease and was helped by the same treatment that could be provided to Hannah if the insurance company would pay for it.
In the end, this is what the health care debate comes down to. People like Hannah fighting to get care and being undercut by a deeply flawed system.
The insurance company made a decision that was based on the bottom line. Hannah’s disease effects a small portion of one-percent of the population and I can only assume the company decided that her treatment could be exempted, therefore saving them $300,000.
This is exactly what a death panel looks like. The company made a decision based on profits, the result of which could kill a UMass student.
The trial that Hannah was recommended for, “Scleroderma: Cyclophosphamide or Transplantation” (SCOT) received praise from Becker, “I think they should be providing coverage because this is medically necessary and potentially life changing.” According to the article in the Gazette, when Becker needed the procedure done, his insurance paid for what he called a “medically necessary” procedure.
The insurance company replied to Hannah’s request for coverage by saying in essence that the coverage was still experimental and not medically necessary.
Congress has been talking for months now and the public seems to be tiring of the debate. It is, however, important to keep in mind that this debate is not simply about policy but instead it is meant to alter an incredibly important and personal aspect of someone’s life.
There are some good proposals embedded in the thousands of pages of legislation. No longer should you be able to be denied coverage because of a preexisting condition; drug prices should be negotiable. Most importantly, insurance companies desperately need regulation because they are dealing with people’s lives directly.
Think the system is okay like it is now? Then there needs to be explanations for situations like the one in which Hannah is in. Right now, her disease is in the beginning stages: it’s harder for her to move around the house, it is more difficult for her to play an instrument and she feels tired more often. In all likelihood, life will only get more difficult for her as time progresses.
Whatever your opinion on health care, it is all too easy to forget that it deals with real people in life or death situations. Altering the debate in order to achieve political gain is intolerable, saying government wants to kill people because they are going to discuss end of life care with patients is unfounded and making people believe that the other side is directly working against freedom is laughable – if people weren’t so frequently making these kinds of charges allowing the uniformed to believe its misinformation.
Until some of this legislation is passed and people like Hannah are able to get the treatment of which there is much evidence could save their life, people will suffer and that suffering could be in the form of a 21-year-old UMass student living with a drastically shorter life expectancy than she could have had if she had been born with an extra $300,000.
In an email, Hannah said, “It’s enough that we have to deal with these terrible diseases, but on top of that, we have to fight for treatment that could either relieve some symptoms or even halt the disease?! It’s just ridiculous. I need to focus on my health, not on anything else.”
Hannah had to receive news that most of us could not imagine having to live with. Adding to her situation is the fact that the bottom-line of an insurance company might mean the difference between whether she lives past five years or not.
Whatever your beliefs, people like Hannah should never be in the situation she must now face. In America, we take care of each other better than this.
Michael Phillis is a Collegian columnist. He can be reached at [email protected].
Andrew Coler • Dec 4, 2009 at 12:39 am
Lets get the facts straight. One I am not a Umass Professor. I am a child care teacher at the Center for Early Education and Care, and two the cytoxin arm of the SCOT study is much different. It is not only given for a longer period of time but the dose is considerably higher. She can not get this amount prescribed outside the SCOT study. Believe me we have already looked into this.
Ed • Dec 1, 2009 at 12:01 pm
This is a difficult situation but we do need to be very clear and careful on the facts.
First, the Amherst Bulletin article is at:
http://www.amherstbulletin.com/story/id/160560/
The relevant sentence is: “The SCOT trial patients take one of two treatment routes: either high doses of the chemotherapy drug Cytoxan or a stem cell transplant. The trial compares the results of the two for mortality and organ damage.”
What this means is very simple: If the insurance company pays a whole lot of money to subsidize a drug company product development effort (which is what this is) then she either will get a higher dose of a drug that she likely is already taking (and could be prescribed by any licensed physician) or some experimental drug that may be effective but isn’t proven to be such yet.
The evil person here is the drug company.
The insurance company is doing exactly what I would do — offer to pay for a high dose of Cytoxan (which likely isn’t cheap) but refuse to pay for drug company research efforts. It isn’t like the drug company is going to give the Commonwealth a discount on all their new drugs if we subsidize the development of this one…
Second, and I missed the part about the appeal to the GIC (Commonwealth of Massachusetts Group Insurance Commission) the first time because I didn’t recognize UniCare as one of the GIC options, but THIS IS OBAMACARE ALREADY!!!!
Her father is a UMass professor, and like all UMass employees, like all employees of the Commonwealth of Massachusetts, already participates in the exact kind of insurance plan that Obama wants everyone else to have. The GIC is one of the few competent Massachusetts agencies and my approach to MittCare was to simply let anyone who wanted to purchase anything they offered at full price (and not the 85% employer subsidy that public employees enjoy).
But facts matter and SHE ALREADY HAS THE EXACT KIND OF INSURANCE THAT EVERYONE WANTS TO SEE EVERYONE HAVE. Sarah Palin talks about “death panels” – well what do you call the GIC review board? And anyone saying that this tragic case is justification for ObamaCare is being disengenous because she already has what ObamaCare would be IF they actually keep their promises.
Third, what ever happened to charity? Her father *is* a UMass Professor. If every UM employee with a six-figure salary was to donate $100, she would have more than enough money to pay the evil drug company to participate in their clinical trials. I do think the drug company is the evil one here, but this is what charity is for…
Fourth, it is a pity that the gay activists who got changes in cancer drug research rules approved in the successful effort to address the AIDS issue of two decades ago didn’t demand that these changes be applied to all terminal cancers. (Which is what AIDS was back then.) Their argument was that we are going to die anyway so let us take the AZT and if it doesn’t work, fine we still are dead. And if it has toxic side effects that kill us, we still are going to die if we do nothing.
They won – the Reagan administration wasn’t quite as homophobic as some would believe – but this was a one-time exception and not the reform that it should have been. As long as the drug companies aren’t lying, as long as there is informed consent, whose body is it anyway and who has the right to say what you can and can not do to your own body?
And above all else, do not forget that she already has ObamaCare. Unlike a private citizen who could purchase health insurance from whomever, her father had about five options and UniCare is one of them. And she is in the exact situation that everyone on the right is warning that the rest of us well may find ourselves if this passes….
Andrew Coler • Nov 30, 2009 at 7:29 pm
I am the father of Hannah Coler, and i just want to clarify some information. The SCOT study has two arms, Stem cell transplantation and High-dose monthly Cytoxan. Now for some statistics. Without treatment Hannah has a 50% chance of being alive at 5 years. If she is a participant in the study her odds go up dramatically. In the Northeast site 50 out of 52 patients who participated in the study have had success with the treatment. Nationally 80% who receive the stem cell treatment got better, greater than 50% from the Cytoxan arm. What makes the Cytoxin arm much more effective then the convential theorapy is the dose and the duration in which it is given. Finally the SCOT study has been in phase 3 for over three years.
Need I say more
Ben Rudnick • Nov 30, 2009 at 7:08 pm
Michael,
The problem I see with your article is that is assumes that the health care reform currently being debated will actually do something to help Hannah. The truth is that it will not. There is not one word in either bill, Senate or House, that suggests that that health care reform will include coverage for treatments that are deemed “experimental.” Hannah is not being denied coverage because she has a pre-existing condition, she is being denied it because the treatment is classified as experimental.
I would have to read through a copy of her health insurance contract, but I would guess that the determination of whether a treatment is “experimantal” is based on how it is classified by the FDA, which is how those things are usually done. Assuming that is the case, then the health care reform currently under consideration will almost certainly come to the same conclusion as the insurance company has in her case. Not to mention that the Senate bill would not become fully implemented until 2014, and would therefore not impact her current situation either way. Finally, if it seems difficult to deal with an insurance company on matters like these, can you imagine how hard it will be to deal with the government bureaucracy?
Michael Phillis • Nov 30, 2009 at 12:37 pm
Ed, thanks for the input. It’s very appreciated. The 50 percent chance of being given the drug test and 50 percent of not being given the drug test – all of those kinds of factors are specific to various trials. Here, you are dealing with stem cells which, I believe and I can try to get an answer for you about this, would be administered.
Second, the 50/50 chance of making it through the next five years was a survival statistic not a statistic on her being given the drugs.
From the article:
“With diffuse scleroderma, there is a 50 percent chance the disease could prove fatal to her over the next five years, she said.”
Thanks for the input again, you are always good about responding to comments so I look forward to hearing your reply.
-Michael Phillis
Ed • Nov 30, 2009 at 1:49 am
I read the Amherst Bulletin article a little differently.
Apparently there is a drug company test going on – and she has a 50% chance of being given this drug if she is in the test, and a 50% chance of not being given it.
Now the question I have is threefold: First, why are the drug companies charging “volunteers” to participate in their drug tests? One of the reasons why drugs are so expensive, we are told, is because of the costs of things like these trials.
Second, why should the insurance company pay anything without the assurance they will get what they are paying for? The fact that they might even consider doing so is scandalous!
And third, why aren’t people going after the drug company here, not the insurance company? Well????