Wednesday, October 7, 2009

My letter to the President

This morning I began reading a book that my amazing colleagues at PwC sent to me in a care basket: "Waking the Warrior Goddess: Harnessing the Power of Nature & Natural Medicines to Achieve Extraordinary Health", written by Christine Horner, M.D., F.A.C.S. Dr.Horner's mother died of metastatic breast cancer which was a recurrence after her diagnosis of early stage breast cancer 5 years earlier. Additionally, Dr.Horner saw patients in her cosmetic surgery practice who suffered greatly because insurance companies were denying coverage of reconstruction following mastectomy surgeries. The book begins with the story of Dr.Horner's quest to get legislation passed to require insurance companies to pay for breast resconstruction for breast cancer patients. It took time, determination and a lot of guts, but she did it. Because of her efforts, the law passed in the last day of the 1998 Congressional session after it had appeared to be dead. Because of Dr.Horner's efforts, I (and millions of other women) will not be/feel deformed from breast cancer treatment. I am grateful to Dr.Horner. I'm inspired by her too. I have known since the day I was diagnosed that my cancer should have been found sooner. It infuriates me that I was refused mammograms for at least 3 years during annual physical exams because I was under 40 and didn't have a "strong family history" of the disease in spite of the fact that women in their 30s is the fastest growing group being diagnosed with breast cancer and that over 85% of breast cancer patients have NO family history of the disease. I am angry that the greed of insurance companies has prevented me from being diagnosed at an earlier stage which could have improved my prognosis - it could have been found at stage I or stage II, requiring less aggressive treatment and giving me a greater chance of avoiding its advancement to my lymph nodes - once it's there the chances of spreading futher go up significantly. I will not sit back and just let this nonsense continue. I have no idea how to start but I must try to make a difference and I must choose a goal. For now, that goal is to try to get a law passed to require insurance companies to cover routine mammograms/screening for women beginning at age 30 instead of 40. Frankly, I think it should be age 20 but I think 30 is an achievable goal. I expect it to be a tough fight. But I'm tough. Dr.Horner set about her goal knowing she had to get to the top - so I guess that's where I'll start too. She set out looking for someone that knew the President (Clinton) or had access to him. She also had the ability to get up and go on a moment's notice - I don't since I'm in treatment and have to schedule everything around treatment appointments - so I'm starting with a letter. I welcome your input on what my future steps should be, what messages should be emphasized, etc...so please write and tell me what you think. Here's the letter I just submitted to President Obama via the White House contact page: Dear Mr. President, I am a breast cancer patient (dare I say, warrior). I was diagnosed with Stage III triple negative breast cancer (an aggressive form of the disease) in May 2009, at the age of 37. For the three years previous I requested mammograms at my annual physical because I had a hunch that something wasn't right - I didn't feel a lump but my gut was telling me I should be checked. I was refused because I am under 40 and because I didn't have a "strong" family history of the disease (but I did have 2 grandmothers and a great aunt who had it) - these being the requirements by insurance companies to cover the cost of a mammogram. When I was diagnosed this year, my doctors told me that based on the size of the breast tumor and the number of lymph nodes with cancer and the size of some of those lymph nodes, the cancer had been there for at least a few years but probably longer. I knew then and there that if I had been permitted to have a mammogram three years earlier I would have a better prognosis today. Additionally, after my insurance company (Blue Cross of California) approved and paid for a double mastectomy surgery, they proceeded to deny coverage of the diagnostic mammogram and breast MRI procedures that led to my diagnosis, indicating that I would have to pay over $8000 for these tests because they didn't believe them to be medically necessary for a woman under the age of 39. I fought this decision and the mammogram has since been covered by my policy, but the MRI is still a battle that takes my attention away from my cancer battle. It's horrifying. I've already paid over $4000 out of pocket between May 27, 2009 - that's my out of pocket maximum for two plan years since my diagnosis came 1 month prior to my plan's year end and treatment began immediately. Earlier this year, a young pre-teen girl was diagnosed with breast cancer. And, the majority of new breast cancer diagnoses (based on comments from my physicians) are being handed to women in their 20s and 30s. I would like to urge you and your staff to please consider including a requirement for insurance companies to cover preventive mammograms at an earlier age. I am not a medical expert but I have become very knowledgeable about breast cancer very quickly and I know that the earlier it is caught, the better chance a woman has at beating the disease and avoiding the very costly and dangerous treatment that ensues when the disease advances. I am living that right now. My prognosis would have been far better had I been permitted to have a mammogram three years ago at the age of 34. I know I'm not alone in this. My small support group at UCLA is filled with women in their 30's who have advanced breast cancer. At the very least, women should be permitted to have their insurance cover routine mammograms beginning at the age of 30. Mr.President, we have one shot at getting this healthcare reform right given the great deal of skepticism and opposition that we're seeing from the right side of the aisle. Please give women a better chance at surviving breast cancer by giving us a chance to detect it earlier through routine mammograms at the age of 30 (instead of 40). Thank you for your compassion and consideration, Julie Olsen

4 comments:

  1. Julie, your letter is well-written and clearly and passionately supports your goal. I agree with you 100% that mammograms should be covered at the least by age 30. Given the cost of treatment in advanced cases of breast cancer, I find it hard to believe that it would not be more cost effective in the long run to provide mammograms earlier than they are offered now.

    This is an aside... I do have a suggestion that perhaps it might helpful to send your letter to your state and federal legislators, also. Just a thought I had before I started getting ready to turn in for the night. :)I'm praying for you!

    Love to you from NY--
    AB

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  2. You are a warrior!!!!

    I had a friend who had to battle the healthcare system to get a prothesis for her child. The place she started was getting a local senator on her side. Someone who knew the people to talk to, the people to go to.

    Just remember to take care of yourself - take it easy.

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  3. Beautifully written. I echo the suggestions above, and I think we ALL need to send these emails. Do you mind if we 'copy and paste' your letter as an example of why things need to change?

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  4. I love your letter! You are so right! These companies suck and should be ashamed! Let me know what I can do to help.

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