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Your Turn... (Readers: Please note that we have deleted the names, addresses and phone numbers of the people who have contributed their experiences and ideas to "Your Turn". However, we would be happy to direct your inquiry or communication to them. Please contact us through our email: help@bmtnews.org, by phone: 847.433.3313 / 1.888.597.7674, by fax 847.433.4599, or by mail: BMT Newsletter 2900 Skokie Valley Road, Suite B, Highland Park, Illinois 60035. Thank you.) Your Turn... "I have CML (chronic myelogenous leukemia) and am currently on interferon therapy. I would like to communicate with others who are on interferon. SW, Texas From Kiplinger's Personal Finance Magazine, February 1993. "Ask Karen Heiser what it's like to be a cancer patient and you won't hear about the ravages of chemotherapy or the fear of dying young. You'll hear of grievance analysts and appeals boards and the other vernacular of what's called managed care. "Heiser, 32, of Thousand Oaks, Ca., suffers from an advanced case of non-Hodgkins lymphoma... The specialist she was referred to by her HMO recommended a bone marrow transplant...Two other doctors Heiser consulted on her own wrote letters giving concurring opinions. "Six months later, Heiser still hasn't received the transplant. The HMO's review board denied authorization_ claiming Heiser was not a good candidate for a transplant. In the process of reviewing Heiser's case, says Heiser, the HMO, Maxicare of Southern California, questioned the competency of its own doctor. Heiser and her family switched to a more expensive fee-for-service plan offered by Grumman, her husband's employer. The new plan agreed to pay for her cancer care_but not necessarily the bone marrow transplant. Welcome to managed care." "Here's a copy of the article that appeared in Kiplinger Magazine about me, thanks to your help. A quick update: I'm now insured with an indemnity plan choosing my own doctor! Yeah! I'm waiting to hear from UCLA about whether or not I should go ahead with the transplant. I can't tell you what a joy it is to be handled by professionals, and to have doctors make decisions about my health care instead of an insurance company." KH, California "I had a BMT in 1990 for aplastic anemia, and wish I could have talked to someone ahead of time to get a better idea of what I would be going through instead of just hearing doctors' explanations. I'd like to make myself available to write get well wishes to prospective patients or talk to patients who are about to undergo a BMT to give them encouragement." DM, Washington Editor's note: Many former BMT patients are willing to talk with prospective BMT patients and their families. If you want to talk to someone who's "been there," phone 847-433-3313 or toll-free 888-597-7674. You can also ask your transplant center for a referral to a former patient. Many will be happy to provide you with names. "Thank you for sending your wonderful book Bone Marrow Transplants: A Book of Basics for Patients. I'm a nurse-midwife and have recently been diagnosed with aplastic anemia. I've been reading everything I can find about treatment options. Your book explains BMT very well and I especially appreciate the personal anecdotes about survivors. Their stories give us such inspiration and hope. Before, when I was reading hematology journals, I thought everyone with my condition died. Now I realize the medical literature tends to focus only on the most severe cases and that people who get well are almost never studied or written up." JR, Maryland "My son (36) has been diagnosed with multiple myeloma and his HMO has refused to pay for a transplant. We are as 'middle class' as they come, and the fee quoted to us to do a BMT ($300,000) is beyond our means and expectations. Interestingly, a Canadian BMT center said they would do it for $130,000 (Canadian) if his condition does not deteriorate further while this turmoil goes on between doctors, insurance companies and lawyers. What's the use of having this magnificent technology if no one can afford it?" JP, Utah Editors Note: BMT Newsletter maintains a list of attorneys experienced in helping BMT patients secure insurance coverage for their transplant. Phone 708-831-1913 for a referral. "My 11-year-old son is one year post transplant and doing well physically. Do you have information about BMT as seen through children's eyes? He will see a child psychologist next week (it should have happened sooner). Any information about children who are long-term survivors, similar to what you published in the last newsletter about adults, would be helpful." BM, Massachusetts Editor's Note: If anyone knows of resources that would be helpful to this reader, please contact BMT Newsletter at 847-433-3313 or toll-free 888-597-7674. |
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