Guest guest Posted June 10, 2001 Report Share Posted June 10, 2001 Well, it's been a busy week and an extremely productive one in terms of uterine fibroids awareness in this nation. Last Friday (June 1) I headed to Washington, D.C. to attend a conference on Gender Based Medicine hosted by the Society for Women's Health Research. http://www.womens-health.org/ It was a good conference -- and more productive than I originally imagined it would be. First of all, it was very nice to finally meet Heleen LeRoux from Rochester and learn a bit more about the battle for funding mifepristone research that just seems to never end. (Heleen -- you'll be happy to know that I pushed hard on the funding issue for mifepristone research and informed many a legislative aide that this drug is much more than an abortion pill.) It was also nice to have the opportunity to meet additional women from this list group along with even more physicians who are interested in fibroid and hysterectomy alternatives research. Marcy Gross, Senior Advisor on Women's Health for the Agency for Healthcare Research and Quality (AHRQ), was a delight to meet and also very helpful with dispensing advise on how to propose more fibroid research funding through their agency. She also indicated that the full, evidence based report on the " Management of Uterine Fibroids " should be available soon. The summary is still available here: http://www.ahrq.gov/clinic/utersumm.htm She was also kind enough to fortify me with plenty of copies of the summary to distribute to Congressional Representatives (and/or their legislative aides) that were on my meeting schedule for later in the week. Conference presentations spanned the gamut of women's health issues, including cardiovascular disease (the #1 killer of women in this nation), diabetes, calcium deficiency vs. PMS (and how both of these seem to have identical symptoms and both seem to respond to calcium supplementation), HRT (with a most interesting diatribe against long-term HRT use as well as HRT use that is prophylactic and not specifically addressing menopausal symptoms), alternative health care -- including a quick and dirty on all the typical herbal remedies that women use to treat abnormal bleeding as well as menopausal symptoms, embolization for fibroids (with Dr. , an interventional radiologist from Florida, giving the presentation), obesity, and female sexual dysfunction (a rather questionable attempt to pitch a book by a young man from Hawaii). The most interesting point that caught my attention had to do with cardiovascular disease. A Cedars-Sinai cardiologist from California, Dr. Bairey Merz, showed an overhead map of the U.S. with states ranked by prevalence of disease. It caught my eye because the very states that were identified as having the highest statistics for heart disease in women, looked remarkably similar to the map I've seen of the prevalence of hysterectomy in this nation. Is there a relationship? Well, it definitely made me wonder whether or not the stats would be a close mirror all the way through with all the states.... anyone know if this has been looked at like this before? Dr. Bairey Merz is currently involved in a multi-million dollar study that's looking at developing better techniques for diagnosing heart disease in women -- a study that's been examining the protective value of phytoestrogens. Of all the presentations, this one was the most informative and compelling. Ironically, although cardiovascular disease is the #1 killer of women in the U.S., it ranked rather low on funding in at least one funding table presented by the CDC. The #1 funded disease? Breast cancer. Over and over again. Breast cancer. Strong patient advocacy apparently pays off. Maybe if heart disease wasn't killing so many women there'd be more left alive to advocate for funding..... http://www.newswise.com/articles/2000/1/BEANS.CED.html Beyond cardiovascular disease, the presentation on obesity made me feel fat, the dinner discussion of diabetes made me reject my dessert, the calcium research that was presented made me wonder about my vegan daughter's own PMS and the vitamin deficiencies it probably represents along with the myriad of painful symptoms she suffers through monthly, and the female sexual dysfunction talk made me realize that I know way too much about female sexual dysfunction because I was sorely dissatisfied with the glib presentation that said little to nothing that was informative on female sexual function/dysfunction and even contained woefully incorrect statistical references to published literature. Since I'm not a physician, I also wondered whether or not physicians who attend conferences like this transfer the presentations to their own personal lives (as I did) or do they only gather the info for their patient population? Hmmm. Any doctors in the house who care to comment on this? The last day of the conference was spent with the Women's HealthCare Coalition learning about how to approach Congress on the issue of funding women's health research. During the luncheon, I was extremely fortunate to be seated with Vivian Pinn, NIH Associate Director for Research on Women's Health and Director for the Office of Women's Health Research. http://www.wellesley.edu/Anniversary/pinn.html Come on now. Please tell me that there isn't anyone on this list group who would honestly believe I would pass up an opportunity like that one to steer the discussion towards fibroids! Pinn told me she needs letters from women AND researchers to support the research agenda on fibroids. Intelligent letters. No threats, no demands -- just strongly worded letters requesting more funding for research on fibroids. She definitely has fibroids identified as a top priority....but she needs more from us in order to keep this proposed priority in her annual report. She specifically suggested that women with fibroids, along with their physicians, open their mouths and come out of the closet on this issue. Get out your pencils and paper..... Vivian W. Pinn, M.D. NIH, Office of Research on Women's Health EPS Location 6120 Executive Blvd., Room 150A Rockville, MD 20852-4909 Beyond the conference, I spent an additional 3 days walking the Capitol and talking to every California Congressional Representative's legislative aide or leaving materials with office staff that pointed to the need for their support of HR 1672 Uterine Fibroids Research Education Act 2001. In all, California has 52 Congressional Districts. I don't believe I missed a one. At least, the blisters on my feet are telling me that I didn't miss a one! In addition, I pitched the idea of a companion bill to Senators Boxer & Feinstein and came away feeling as though this is a very real possibility. I was most impressed by aides who chose to share with me their own personal stories. Now, mind you, by and large these aides are very young men and women generally fresh out of college and/or interning a year in Washington, D.C. while working on a political science, law, or international affairs degree. Young = under the age of 25 in most cases. (A few were older -- but they were the rarity, not the norm.) These young people may not have known much about uterine fibroids, but they most certainly knew the ramifications of hysterectomy. Many of them shared stories of mothers or grandmothers who had undergone hysterectomy. One aide told me how her grandmother died during hysterectomy surgery, another told me of her own mother's hysterectomy and how it " changed " her forever, and yet another talked about how hush-hush the discussion of hysterectomy was in her own family growing up. She never knew why her mother had a hysterectomy and was curious to learn more about why women end up with this surgical outcome. All seemed perplexed over the need for this surgery and all were extremely interested in learning more about uterine fibroids and how they, personally, might be able to impact change for future generations of women in this regard. This isn't the first time that I've felt that young men and women of college age are our greatest allies in pushing forward the research agenda on uterine fibroids and alternatives to hysterectomy treatment -- but it was the most overwhelming emotionally. They were receptive. Indeed, several left messages on the NUFF phone line within 24 hours of my visit proclaiming support and cosponsorship for this bill from their Congressional Representative. For those who didn't do this, it was clear to me that they need to learn more than what I could impart in a 5-30 minute visit before they could truly understand the importance of this bill. Coordinators for the Women's Political Caucus have suggested the next step to possibly be an educational briefing. So, that's the next item on the agenda to work towards. There is support out there ladies. Lots of it. But in order for our voices to be heard, we must be willing to speak up loud and clear. If you live in the Washington, D.C. area, please drop me a line so I can share with you ways in which you can continue to carry this message to Congress and the NIH. Also, California is only 1 state. If you live in another region of the U.S. and haven't written to your Congressional Representative yet, I urge you to do so today. You can learn more about this bill at: http://thomas.loc.gov/cgi-bin/bdquery/z?d107:h.r.01672: If you don't see your representative's name on the list of cosponsors for this bill, please search for their web information and write them a letter. You can find their mailing (email & snail mail) information here: http://capwiz.com/fmf1/dbq/officials/ We need everyone's help on this one. There are still quite a few states where not a single representative has signed onto this bill yet. Also, quite a number of medical groups have sent in letters of endorsements and some of them are even sending members to D.C. next week to visit their representatives. It will take a lot of work to get this bill the attention it truly deserves. Won't you please help? ------------------------------------------------------------------------ Margaret Mead said it best -- " " Never doubt that a small group of thoughtful committed citizens can change the world. Indeed it's the only thing that ever has. " -- and those of you who receive my email regularly know this phrase by heart by now. I announced last week the change in Blue Cross coverage for uterine artery embolization for fibroids in Oregon and now Oregonian columnist Margie Boule has written an update on that change in policy in conjunction with an update on the story she wrote about Patty Nomie's pursuit of UAE in Oregon. Personally, I don't believe that Blue Cross would have changed its policy if it were not for media involvement. There were indeed other women before Patty Nomie (and some since Patty) who set out to appeal their denials with Blue Cross of Oregon, all to no avail. Many before Patty (and many still in Patty's prior denial boat) did everything she did -- and then some -- and still received denial letters. Here's a prime case (and most typical) of denials and communication between a patient and Blue Cross: http://www.proberts.net/uae This was a well organized, incredibly intelligent battle fought by and her spouse, , in pursuit of coverage for UAE for 's fibroids. It bought her nothing but denial after denial. Including a final denial on May 18 -- less than 2 weeks before Blue Cross of Oregon changed its policy entirely. Bottom line? Without a media avenue to broadcast this story and let women know they are not in isolation when it comes to their thoughts on keeping their uterus and desires on avoiding major surgery, no woman will make headway with corporate giants like Blue Cross. So, my sincere thanks goes out to Margie for paying attention last fall when I went knocking on her journalism door and even more thanks for taking on Patty's case and reporting on her battle. Not only have you helped the women with BC of Oregon and other affiliated state plans, but you've also helped those in states who are still fighting this battle, like Blue Cross of California subscribers. With so many plans now covering UAE, how can plans like BC of California continue to hold out? I don't think they can. So, thank you Margie. And thank you to Patty Nomie too -- a wonderful and deserving woman who readily stepped up to the plate to make her story public. And while I'm at it -- thank you to ALL of the members of the media who have reported on fibroids and our limited treatment options. There's change in the wind. I just know it. I do believe our " ...small group of thoughtful committed citizens... " has grown in size. What do you think? Battle gives woman a measure of her own strength Margie Boule, Oregonian Sunday, June 10, 2001 The next time you hear a cynic say one person can't make a difference, tell the cynic about Patty Nomie. Read the rest here: http://www.oregonlive.com/news/oregonian/margie_boule/index.ssf?/news/oregonian/\ margie_boule/lv_11boule10.frame ------------------------------------------------------------------------ Mind-Body Research Matures Mounting evidence prompts NIH to embrace a once-marginal field By Steve Bunk The Scientist 15[12]:8, Jun. 11, 2001 For years, mind-body research has been conducted at the perimeters of the scientific mainstream, but that marginalization appears to have ended, as the National Institutes of Health funnels money and personnel into interdisciplinary investigations of the relationship between mental states and physical health. Oddly, the way mind-body medicine has achieved this acceptance is by establishing the very molecular and cellular evidence of the role that the mind plays in bodily health that it once eschewed. Read the rest here: http://www.the-scientist.com/yr2001/jun/bunk_p8_010611.html ------------------------------------------------------------------------ Discovery Health PULSE Episode 1213 Jun 13 2001 7:30 AM EST (4:30 PST) Jun 13 2001 10:30 AM EST (7:30 PST) Jun 17 2001 5:00 AM EST (2:00 PST) Jun 17 2001 7:00 AM EST (4:00 PST) This episode of PULSE TV includes a segment on uterine artery embolization at UC and a member of the uterinefibroids list group who, as it turns out, was the " turning point case " (much like Patty Nomie was for BC of Oregon) for Blue Shield of California to begin approving embolization coverage last summer. I wonder. Just how much harder do we have to knock on Blue Cross of California's door to get their technical assessment committee to get off its duff and listen to women in this state? ------------------------------------------------------------------------ Well, this isn't one of my favorites in the world of health videos but I do know there are always new women joining this list group with an interest in hysterectomy surgery..... Discovery Health Laparoscopically-Assisted Vaginal Hysterectomy Jun 15 2001 2:00 AM Jun 15 2001 7:00 PM Darlene Lanka, MD of Walnut Creek, California, performs a laparoscopically assisted hysterectomy. The surgery involves removing the uterus, fallopian tubes, and ovaries through the vagina. ------------------------------------------------------------------------ I missed this story back in April....a hysterectomy interfering with fertility can be traumatic, that's for certain. Would it drive you to take/keep someone else's child? Detectives tell of girl's odyssey St. sburg Times; St. sburg, Fla.; Apr 23, 2001; JOY DAVIS-PLATT;SAUNDRA AMRHEIN In a red file folder, Lazalia Urick carried immunization records, birth certificates, police reports and an ink impression of a baby's footprints. For seven years, she thought that was all she would ever have of her abducted daughter, Crystal. Last week, though, a fresh sign of the girl emerged: a recent photo seen at a Hernando County home. On Sunday, two Hernando detectives told how that tip helped them make a case in four days that others hadn't been able to make in seven years. They tracked Crystal's odyssey from Hernando County to Mexico to North Carolina, and they arrested the woman they say took the girl as an infant. Read the rest here: http://pqasb.pqarchiver.com/sptimes/main/doc/000000072728871.html?MAC=ba37208439\ f1a656518455dc966a683f & QIID=000000072728871 & FMT=FT ------------------------------------------------------------------------ Would you undergo a hysterectomy to decrease your chances of breast cancer? A researcher in this story did....wonder how she now feels about reports of prolonged hormone replacement therapy use increasing risk of breast cancer? Gene Discovery: Brave New World Research is likely to quicken cures; world wonders where to draw the line By A. Webster / The Detroit News 2/13/01 With extensive details of the human genetic code now published, a global scientific adventure is under way that could cure diseases, launch new areas of research and create new biotech businesses and products while raising complex ethical questions for society. Read the rest here: http://detnews.com/2001/health/0102/13/a01-187455.htm ------------------------------------------------------------------------ I haven't had much time to scan the medical journals this week -- but hope to get back to that task in the coming week. Best wishes to all of you this week and always. Visiting D.C. always takes my breath away and visiting the many memorials is a humbling experience that I never pass up when in town. One of my favorites is the Lincoln Memorial. I brought a poster home this time -- " Abraham Lincoln's Rules of Conduct. " Here are a few of his rules to help you breathe this week.... " The fact is, truth is your truest friend, no matter what the circumstances are. " " By all means don't say 'if I can,' say 'I will.' " " I say 'try.' If we never try, we shall never succeed. " Excellent words of advice that have withstood time. The bottom line is always relatively simple. If we don't start SOMEWHERE on this path towards change, then our daughters will be precisely where we have been -- waiting for the next surgery date on some doctor's hysterectomy calendar.... Carla Dionne Executive Director National Uterine Fibroids Foundation 1 (877) 553-NUFF mailto:carla@... http://www.NUFF.org /list/uterinefibroids " Never doubt that a small group of thoughtful committed citizens can change the world. Indeed it's the only thing that ever has. " Margaret Mead Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2001 Report Share Posted June 12, 2001 Hi Carla, I don't know of any other women in Mpls. who are appealing. I will check with my IR and ask him...I have been denied twice by Allina- Medica and now have the choice of going for a next level of appeal or an external independent review. I want to go for the external review cause my IR told me he spoke with someone from medica and medica isn,t even considering uae appeals that come their way and that my best hope is for the external review. > > > How can a person best get the media involved, how do I decide > > whom to approach and how to get their attention? > > Thanks, > > Do you have a popular columnist in Minneapolis that everyone reads? > Someone who writes about people and stories in the community on a > regular basis? If so, pick up the phone and call him/her. > > This isn't something that happens overnight though. Most columnists > have a lot of story ideas thrown at them every week. But, if you don't > call or write they'll never know your story is " out there " needing to be > told. > > Where are you in the appeals process for your UAE? Do you know of other > women in Minnesota who are also appealing? Any chance your IR would > know this? Do you know of other women in your area who have been denied > coverage? > > carla > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2001 Report Share Posted June 25, 2001 As I was reading through some of this transcript on the FDA meeting one thing leapt out at me. Vicki Hufnagel mentions that she operated on the patient she holds up as a case study, that she removed 50 fibroids after this woman had a UFE and she mentions that the woman is still in the hospital. She also mentions that she is calling in from California. I understood that her license to practice in California had been suspended. Has it been re-instated? DeAnn P.S. She mentions that she has no conflict of interest but there seems to me to be a conflict of interest between a person who's practice is made up almost entirely of myomectomies testifying against a popular alternative to her surgery. Just a thought. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2001 Report Share Posted June 25, 2001 As I was reading through some of this transcript on the FDA meeting one thing leapt out at me. Vicki Hufnagel mentions that she operated on the patient she holds up as a case study, that she removed 50 fibroids after this woman had a UFE and she mentions that the woman is still in the hospital. She also mentions that she is calling in from California. I understood that her license to practice in California had been suspended. Has it been re-instated? DeAnn P.S. She mentions that she has no conflict of interest but there seems to me to be a conflict of interest between a person who's practice is made up almost entirely of myomectomies testifying against a popular alternative to her surgery. Just a thought. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2001 Report Share Posted June 25, 2001 As I was reading through some of this transcript on the FDA meeting one thing leapt out at me. Vicki Hufnagel mentions that she operated on the patient she holds up as a case study, that she removed 50 fibroids after this woman had a UFE and she mentions that the woman is still in the hospital. She also mentions that she is calling in from California. I understood that her license to practice in California had been suspended. Has it been re-instated? DeAnn P.S. She mentions that she has no conflict of interest but there seems to me to be a conflict of interest between a person who's practice is made up almost entirely of myomectomies testifying against a popular alternative to her surgery. Just a thought. Quote Link to comment Share on other sites More sharing options...
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