Regular EmpowHER readers know that I was diagnosed with a rare form of leukemia about one year ago, and live in the state of Arizona. I'm currently responding well to treatment, but am well aware that if I should develop certain complications the only thing that would save my life would be a stem cell transplant, which carries a minimum $300,000 pricetag, involves extremely painful procedures and carries a 20 percent risk of death and other risks.
Under the current healthcare system in our country I am not eligible for insurance due to my pre-existing condition of cancer. The only way I could get a transplant would be through the Medicaid system. Arizona politicians, however, implemented cuts to the state Medicaid program yesterday that mean transplants for me, and for many other patients are no longer available. In essence they have decided that we will die in order to cut $5 million from the state budget.
While I am fine as of this writing, others are not. For example, leukemia patient Mark Price has just learned that matches have been found for a needed transplant but now he no longer can get the procedure. http://www.azfamily.com/news/local/AHCCCS-changes-preventing-man-dying-of-Leukemia-to-get-transplant-104190994.html
In response to questions from reporters, the Governor of Arizona said: "We have a responsibility as policy makers to make hard decisions and those decisions have to be made for the citizens of Arizona. We have a Constitution to live up to and certainly we're going to do that as we move through the process." The "process" she refers to now has a father of six facing death. http://ktar.com/category/local-news-articles/20100930/AHCCCS-cuts-leave-father-of-six-facing-death/
This man's story is not an isolated incident. There are countless other stories involving both children and adults. There are also other types of procedures that are no longer covered in Arizona and these changes have started impacting the quality of life of current Medicaid patients and/or will result in the need for more expensive medical procedures down the road to correct the problems caused by the lack of access to basic care in the first place.
I have been blessed by the good wishes and support of hundreds of people in my journey with leukemia. I've found that most people have been shocked by the price of cancer care and the impact that it has on individual lives, with or without private insurance. I've found that most people understand that any single one of us can get into a health crisis that may call for extraordinary measures, such as a bone marrow transplant, to save our lives, and they've seen this as something that we, as a collective community, will help pay for. I have never, ever, had anyone say to me that I should just be prepared to die and give up on life because I have leukemia. Until now.
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Leukemia patient Mark Price died on Sunday, November 28. The Associated Press reported that he died from complications related to his illness and treatment. His doctor said Price faced the challenges of his situation "with courage and dignity."
November 29, 2010 - 7:15pmThis Comment
Cary, Anon and LV - Thanks for your support and comments. Since I wrote this "Share" in early October another Arizona patient's life has been impacted - a father with hepatitis C lost the opportunity to obtain a liver specifically donated to him by the donor's family to restore his health. Local and national media have given the situation a lot of attention, and national transplant organizations have become involved in trying to help craft a solution. Thus far the Leukemia and Lymphoma Society has not become involved.
Since this site is focused on health I'm not going to make any political comments here. I do think it's important for all of us to advocate for our own health and make people aware that real "death panels" are in place in the United States in 2010. If this can take place in one state, and is successful, it could occur elsewhere and with other life-threatening medical conditions. It's perhaps an outcome of leaving patients out of the decision making process and we all need to work on changing this. Pat
November 19, 2010 - 5:24pmThis Comment
Hi Pat!
November 19, 2010 - 2:08pmYou and I are in the same boat -- apparently a sinking one in need of hope...
A stem cell transplant could some day save my life. I have always paid my bills, paid my taxes, worked for a living, and loved Arizona and my country in spite of its warts. And now when I need the help -- just like others with leukemia -- it has been taken away from me by politicians.
-- LV
This Comment
An update, as reported in the Arizona Republic
October 7, 2010
An anonymous donor will cover all costs for a bone-marrow transplant for Mark Price, a Goodyear leukemia patient who became the poster child for Arizonans affected by the state's budget cuts on transplant coverage.
Price's story spread nationally after his doctor, Jeff Schriber, said last week that Price would die without a transplant. The donation would be at least $250,000.
"I've been told we are a go. I'm taking it and running with it," Schriber said Wednesday. Price found two donor matches Saturday. But cuts to the Arizona Health Care Cost Containment System went into effect the day before, and Price became ineligible.
October 7, 2010 - 5:49pmThis Comment
Pat you make a very good point and I was not aware that this was going on in my country. Thank you for bringing this to our attention. I'm sure that every state is looking for ways to cut back on expenses, but why is is always education and healthcare that has to suffer? Who is taking a cut in salary, or driving their state owned cars longer? Why can't everyone just pay for their own lunch instead of putting it on their expense accounts for reimbursement? You have to eat lunch no matter where you are. In my region, the state has gotten rid of the cars for the most part and began leasing them. Everyone with an ounce of math moxy concerning the leasing of cars knows it is the most expensive route you can take and no way to "save". When times are tough you cut back on gratuitous spending; you forget about the mileage on the odomoter, take it to the car wish, clean it up and drive that car another year and you don't buy new furniture or redecorate your office at the expense of the already strapped taxpayers. How many times have I heard politicians say, "But it doesn't cost us a thing, the federal government is paying for it." Some of the things they pay for is new buses that are empty, with only an occasional occupant. Some offices are asking for the same things in their budgets, when they could share the same equipment. Beaurocracy doesn't float, it bloats - everything. Let's hope you never need a transplant, but if you do, you may have to move to another state to get it. If they don't spend all of their allocated budget, they hurry and spend it because they won't be able to get it next year. This madness has to stop sometime, why not now?
October 11, 2010 - 11:14pmThis Comment
Pat, thank you so much for bringing this issue to our attention. It is quite sobering to think of all the people who die from treatable conditions in this country strictly due to finances.
October 2, 2010 - 2:37pmThis Comment