Friday, June 26, 2009

Mr. President, Be the Advocate Your Mother Needed

On June 22, 2009, Kathleen Sebelius came to town. About 150 nurses, doctors, Grey Panthers and other health care activists greeted her and Nancy Pelosi at the San Francisco Fairmont with 'Sebelius, Sebelius, you can't hide! Private Insurers are by your side!' and 'Health Care is a Human Right! We will NOT give up this fight!' and some pretty great signs.
Protesting Sec Sebelius at the Fairmont, San Francisco
As doctoraaron and I were walking down the sidewalk in front of the Fairmont with our posters of 'Stop the Insurance Industry Bailout' and 'What's a Life Worth?' a woman stopped us to tell us her story. Her sister had died 4 years ago. She was diagnosed with breast cancer. She lost her job, then unable to pay the pricey COBRA premiums, lost her health care insurance and, finally, unable therefore to get medical intervention, lost her life. Our hearts broke for this woman and her sister. This story that took 30 seconds to tell relayed an exquisite amount of frustration, horror and pain. All of it unnecessary. I made the comment that it makes me so mad I want to tear my head (I'm no longer at the stage of pulling hair out) off.

Hers, of course, is one in a devastating trail of story after story after story. President Obama has a site set up dedicated to these stories.

Like this one:
Cabot, AR

My daughter who at 20 years old and just started her third year of college was diagnosed with pancreatic cancer. She had to drop out of college for the time as she needed to go through surgery. As soon as she left school she was told that she could no longer be on my insurance policy and her coverage was dropped. This is just when she needed the coverage. She passed away within three years but it was horrible and nobody cared. My view of life and society has forever been changed.

Here are a few other sample stories from the President's site.

Heidi from Brooklyn found that although she was covered for cancer care from top-notch Slone Kettering, when her employer switched insurers she was no longer covered because her cancer, which she was in the middle of treating was a pre-existing illness to the new insurer. Her remaining treatments were not covered. Now all follow-up care is also not covered.

Brooklyn, NY

On July 18, 2008, at the age of 29, I was diagnosed with a very rare and potentially aggressive type of cervical cancer: adenocarcinoma with high-grade neuroendocrine features. With no previous medical or familial history of cancer, I was shocked, but grateful that it seemed to have been caught early, and that I had health insurance, particularly in a rapidly destabilizing job economy. I couldn't have known at that time that being unemployed and uninsured would have been a potentially preferable situation than the one I am currently in. Due to the complexity and rarity of my case, my Long Island oncologist referred me to Memorial Sloan Kettering in New York City for treatment. After undergoing to a battery of tests, I was diagnosed with a second unrelated cancer, papillary carcinoma of the thyroid. The diagnosis turned my world upside down yet again, but at this point I was growing accustomed to the uncertainty that coexists with serious disease. I prepared myself for treatment, both physically (undergoing fertility treatments with my partner to preserve eggs and embryos) and mentally: before cancer, I had learned to box, and now, with every jab, hook, and uppercut, I envisioned myself defeating the cancerous cells in my body. This was extremely important as treatment permanently altered my body and its capabilities. In October 2008, I had a radical hysterectomy. Six weeks after surgery, I completed a twelve-week course of chemotherapy (cisplatin and etopocide) followed by a complete thyroidectomy. My hair is growing back, but the two scars that run along my neck and my stomach are permanent. So is my inability to have children. Throughout my treatment, I was eager to face this challenge, overcome it, and move on with my life. From the beginning however, I was faced with another obstacle, this one unexpected: increasing resistance from my insurance company, who directly challenged the very treatments that could potentially save my life. My fertility treatments were my responsibility, since insurance companies use a loophole that applies the definition of "infertility" to exclude cancer patients...and there went $15,000 out of pocket. The last round of chemotherapy was also denied (over $10,000), because the company for which I work switched insurance plans in the middle of treatment, and I have not, to this date, been deemed eligible for continuity of care. My thyroid surgery, follow-up visits with my surgical oncologists, medical oncologist, and endocrinologist are not covered either for the same reason. I am unable to be seen by the doctors whom I have come to know and trust because Memorial Sloan Kettering is out-of-network on my new plan. In fact, there is no comprehensive cancer center that is covered by my new plan, leaving me with the unenviable choice of either paying out of pocket for all future care, or cobbling together a team of in-network doctors who would be working independently rather than as a team on my care, and who wouldn't have access to the research and clinical trials that a case of my complexity requires and that a cancer center provides. It is well documented that the statistical survival rate of young adults diagnosed with cancer is well below those of pediatric patients, and adults above the age of 40. Cancer incidence in young adults (15-39) has doubled over the past 30 years to nearly 70,000 diagnosed each year, and the five-year survival rates in young adults have not improved. This is partially due to delayed diagnosis (no doctor would have ever looked at my history and thought "cancer"), the lack of focus on the part of the medical community regarding young adult cancers (which are often biologically different and more aggressive than cancers affecting people over 40 years of age), and inaccessible clinical trials. The money and time devoted to research of cancer in patients under 15 and over 40 is substantial, which is important, but there is not a proportionate amount spent on young adults. Because cancer is a disease primarily associated with aging, there is little public awareness regarding the unique challenges that young adult cancer patients experience. Without this widespread knowledge, young adults face increasingly difficult odds of survival. As a two-time cancer survivor, I am an anomaly among my peers: I am 30 now, with a history of two cancers, one of which is so rare that there is little related research or clinical trials devoted to it; I make less than $40,000 per year, which is not nearly enough to cover mounting medical bills; I am infertile; and most significantly, I am engaged in a battle of attrition with my insurance company to negotiate for medical care that I have worked for, paid for, yet am not receiving. Against my oncologist's advice, I worked through both surgeries and chemotherapy (I was out of work an average of five days every three week cycle) to keep my insurance, instead of resting and healing, although it has not benefited my case in any way. These issues are my new reality; paying my student loans, rent, bills, are secondary. I went into my thyroid surgery fearing the medical costs far more than I did the actual procedure. That in itself, illustrates how fundamentally broken our health care system is. I am angry. I am disillusioned. I find it impossible to focus on the most important task of healing, when I receive notice each day of medical bills having been sent to collections agencies, that my care is denied yet again, that my credit is now a mess because of these costs. And it is heartbreaking to conclude that my basic survival is at the mercy of a system more concerned with their bottom line that with the human element of medical care.

Shiela from Oregon tells of her friend who will have to make the decision to go bankrupt or die.

Jennings Lodge, OR
I am a 56 year old woman, small business owner, and pay $608 per month for health insurance. I am grateful that I have insurance. My friend found a lump in her breast and has been referred for a biopsy. She has a high deductible policy (so she can afford the premiums), and has just discovered that a breast biopsy may cost at much as $9000, for which she will be on the hook for at least half of that. She is actually questioning whether or not she should have the biopsy, since she doesn't know now she can pay the bills with her income. She works full-time (or 32 hours now...her company cut back her hours due to the economy), has always been self-supporting. She rents an apartment, drives a 20 year old car, doesn't eat out, and is very frugal with her money. It makes me angry, sad and disgusted that she has to even think about whether her life is worth the cost she will have to pay. If she does have breast cancer, it is probably quite curable WITH TREATMENT! If our representatives don't pass some kind of public option in a health care reform bill, I will guarantee my activism in helping to elect people who actually care about the lives of those they represent. There is no valid excuse for this inaction. We are in a perfect position to pass this reform, but we all need to get behind President Obama's plan and get it done!

Samwise is lucky because he can tap into America's Socialized Medicine, the VA, to get the insulin he needs to keep his blood sugar under control. But others in his position having to rely on the private insurance industry would be cut off and left to suffer the ravages of diabetes: blindness and poor circulation that leads to kidney disease, amputations, heart attacks and strokes.

Bellevue, WA

Wa_60 Back in 1993, I was working as a dish washer at Coco's in Olympia, Washington, a coffee shop chain, working for minimum wage. I had no health care coverage, was 27, and thought I was healthy and didn't need it. Was I dead wrong. While working there, I had very severe symptoms that prevented me from barely working. I ended up doing the normal routine of going to the emergency room at the last minute to get treated. I was diagnosed with type one diabetes. Well, that is a death sentance for someone with no health care coverage. On top of that, I had a nice ER bill due to the doctors checking me into the hospital for a few days to stabilize my blood sugar. A very dear friend of mine lent me about a hundred dollars so that I could buy a test kit, and some insulin. I applied for chariety so that my medical bill and hospital stay was covered. But this did not address the life long dependency of having to take insulin. Fortunately, I am also a veteran. I served in the army during the 80s, and I could go to the VA Hospital. I was able/am currently able to get insulin, see a doctor, etc. I am alive ONLY because of socialized medicine. Today, I work as a contract software tester, where I have sporatic employment contract stints. I still go to the VA Hospital for insulin and to see a doctor, because the private insurance I have, which is sporatic, isn't very good. I support single payer, or socialized medicine. Either one will allow me to live. The current system does NOT work. It is a death sentance. This brings up an interesting question: What are minimum wage type 1 diabetics supposed to do to stay alive? Me? I am able to go the VA Hospital. But what if I wasn't a veteran? Simple: I'd be dead. What do you need from me for support of a single payer system, or a socialized medicine? Samwise Galenorn

Kathleen from Washington has MS. When she changed jobs she became uninsurable.
Washougal, WA

I was diagnosed with Multiple Sclerosis in Feb 1988 and have had health insurance for many years still paying 200.00 on top of what my employers werer paying. I changed jobs and now I cant get coverage because of my MS pre existing condition and the coverage costs. Please reform health care

Sites like President Obama's and Guaranteed Health Care have thousands of stories documenting our Health Care Holocaust. The estimate is that 20,000 people die each year because they could not get care because they did not have insurance. They die of something unheard of in the rest of the industrialized world: insurance denial. (See the death clock for how many have died today and how many have died since 9/11, all needlessly.) Others like my daughter suffer unnecessary pain and progression of disease because of insurance company games that delay and deny treatment. We are the only nation on earth that barters human life for money. All this is a crime against humanity. And it has to stop.

President Obama told us last year in a campaign commercial that his mother, who died of ovarian and uterine cancer in 1995, spent her final months "more worried about paying her medical bills than getting well." Living in Chicago and working as a professor of constitutional law at the University of Chicago, Obama at that time was not in the position to provide for his mother the health care, peace of mind or security she needed and deserved. Previous politicians had let Stanley Ann Dunham down by not passing a National Health Plan earlier.

But circumstances have now placed President Obama in a unique position to undo the health care wrongs of the past. He has the chance, in his mother's memory and in the memory of all Americans who have needlessly suffered and died in our insurance profit-driven dysfunctional system, to ensure health care security for all Americans.

Mr. President, Be the health care advocate your mother deserved and needed. 3/4 of the American People are behind you. You lead, Congressional Democrats will follow. That's all we need. Give us expanded and improved Medicare for All. Be the hero we all need. Generations will call you Blessed.


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