ࡱ> 7 ubjbjUU "7|7|qlaaaaa4lbL0c0c0c0c0c0c0c?lAlAlAlAlAlAl$m oel0c0c0c0c0celXh0c0czlXhXhXh0c0c0c?lXh0c?lXhpXhik?l0cb @&c\af l?ll0ll,zph@zp?lXhX To Whom It May Concern: Hello, My name is Lori Wells, and I have a syndrome called polycystic ovary syndrome and with this syndrome I am infertile. I have been trying to get pregnant for 4yrs unsuccessfully, I did not know why I was not getting pregnant till September, 2000, and I was diagnosed with pcos. Right now I am taking fertility drugs, but after my last bottle, I will not be able to continue, because my insurance company does not pay for infertility treatments, medications, invetro fertilization, hsg- x-rays, etc. I am very upset by this, all this time I have been trying to get pregnant and now I cannot go on at all in my treatment, because I cannot afford to. Some plans in Kentucky and other states only offer it in state plans through companies, you cannot get indivisual insurance at all, I have spoken to some insurance companies and they do not consider it important, it is not considered a medical problem, even though there is one, something had to be there to cause women all over the world to be infertile and pcos is one of the leading causes. Pcos is a illness and it can extend to breast cancer, heart disease, diabetes type II, there are so many things. Many of us with pcos are trying to conceive and many of us cannot afford the expensive medical treatments, and really why because all that money you spend out, by the time the baby does get here you are going to be broke and what kind of environment is that to bring a child into, when you cannot afford to feed and cloth it, that is no way to bring a child into this world. Some of us out here in the world are hard working, but still struggling to make ends meet. So I suggest putting in a bill so that insurance companies are made to pay for infertility treatments, meds, etc so that women in Kentucky will not go bankrupt in the process of trying to bring a child into the world, these treatments can cause thousands of dollars and there are many of us that cannot afford to do that. This is very important to consider bringing in a bill to make insurance companies pay for infertility treatments and the meds, etc, there are to many women in Kentucky and around the world, so I am strongly asking you to make a bill to make all insurance companies in Kentucky pay for infertility treatments, meds, etc. Please strongly consider a bill for this in Kentucky, especially consider all the women out here in the world with pcos, please research pcos. Another thing there needs to be is more awareness to pcos, there is not a lot of doctors in ky and around the world that are very educated on pcos, and most women are going untreated, they do not know what is wrong for them, also the families of women with pcos they are not educated, pcos is a widely spread disease and it is also hereditary and there needs to be more research done, I cannot tell you how important that is also for more people in the world to be educated on polycystic ovary syndrome, that is just one more reason why insurance companies need to pay for infertility treatments, because infertility and pcos are a illness and at times they are not a easy one to battle, especially when you are suffering with the pcos. REASONS WHY GOVERNMENT OFFICIALS AND INSURANCE COMPANIES SHOULD CONSIDER THIS IMPORTANT: They are helping women, and women are more than half the population in Kentucky and around the world, and women vote, they vote for whoever is going for womens rights and that is what it will come down to in the end. Infertility is a illness and insurance companies should not say it is not important and not a medical issue, when it is. With this one, there could be a lot of attention brought, because infertility is a medical problem and women do not get infertile without having something medically wrong with them, such as polycystic ovary syndrome. So they are going to have to back it up with a lot of facts as to try to say why this is not a medical problem and if enough women rally with this, they would not come out on top at all, because they would be wrong. INSURANCE COVERAGE FOR INFERTILITY TREATMEN STUDY YOUR PLAN TO REVERSE CLAIM DENIAL By Pamela J. Prager Couples who face infertility not only face the emotional pain associated with not being able to have a child, but may also face obstacles put in front of them by their health insurance company and employers. The following guidelines are designed to assist couples to overcome some of these obstacles on their own. INSURANCE Many insurance companies do not provide health insurance coverage for infertility, or only provide very limited insurance coverage. If your claims for infertility treatment have been denied, take the following steps: State Mandates Determine whether or not you live in a state that has a mandate for infertility insurance coverage. There are a few states that mandate insurance coverage for infertility to some extent or under certain conditions. These states are Arkansas, California, Connecticut, Hawaii, Illinois, Maryland, Massachusetts, Montana, New York, Ohio and Texas. These laws differ significantly. For example, Massachusetts mandates the coverage of infertility treatments. California only requires the insurance company to offer the coverage to employers. It does not require coverage to be provided or mandate the employer to provide coverage. A summary of these statutes can be found at the American Society for Reproductive Medicines web site at  HYPERLINK "http://www.asrm.com/patient/insur.html" http://www.asrm.com/patient/insur.html. If your insurance is provided through your employer, you need to determine whether or not it is an ERISA (Employees Retirement Income Security Act) plan. ERISA is a federal law that regulates employer benefits. It applies to employer insurance plans that are self-funded. You can determine this by looking in your plan booklet or by asking your employer. If you have an ERISA plan, it preempts state law meaning that even if you live in one of the above states, the law is not applicable to you because your health insurance is governed by ERISA. If the state mandate is applicable to you, then you need to determine whether or not the insurance company is in compliance with the law. In Massachusetts, this would be simple enough, i.e. if the policy does not include infertility diagnosis and treatment, then it is in violation of the law. In California, you would need to determine whether or not the coverage was, in fact, offered to your employer. If the law has been violated, then you would need to write an appeal to your insurance company explaining the law to them and that you believe they are in violation of the state mandate. You would then request that they pay for your medical care and correct the violation. Your Insurance Contract Read your summary plan description and your insurance contract. Most people obtain their health insurance through their employer, who provides a "summary" of the health insurance plan. Although this is helpful to some extent, it is the actual contract that controls your health insurance issues. If you do not have a copy of the contract between your employer and the insurance company, ask your employer for a copy. If ERISA is applicable to your situation, your employer or the plan administrator is required to provide you with a copy. You should request a copy in writing. Any person who fails to provide the information that is requested within 30 days may be held personally liable to the participant or beneficiary in the amount of up to $100.00 per day from the date of such failure or refusal to provide the information. Insurance contracts are construed against the insurance company. Thus, if they are going to deny you benefits, it must be clearly stated in the contract. Read your contract to determine if there is a specific exclusion for infertility. If there is no exclusion, you should have coverage. If there is an exclusion, carefully read what it excludes. Does it exclude treatments only, or does it also exclude diagnosis? Generally speaking, if the contract does not have an exclusion for infertility, the insurance company must pay benefits. As an example, I recently represented a woman who had a laparoscopy with an incidental chromotubation because of complaints of pelvic pain. The insurance carrier denied the claim stating it was for the treatment of infertility. By taking the claim through the grievance process, eventually the insurance company made a determination to pay the benefits. We were able to establish that the laparoscopy was not done for infertility, but for pelvic pain. More importantly, the contract only excluded "treatment" of infertility. Since the procedure was diagnostic, the insurance company determined that it was required to make the payment. Thus, it is very important that you determine what is excluded and ultimately the reason the insurance company is denying the claim. APPEALING THE DENIAL OF YOUR CLAIM If you have read your contract and believe you should have coverage (and your insurance company has denied a claim or stated you do not have coverage when preauthorization is requested), write your insurance company and ask for identification of the specific reasons for the denial and under what provision of the contract your claim is being denied. In the past, insurance companies that do not have exclusions have denied claims for one of the following three reasons: 1. Infertility is not an illness; 2. Treatment of infertility is not medically necessary; or 3. Treatment of infertility is experimental. These are invalid reasons to deny your claim. Infertility is an illness. Medically necessary is usually defined by insurance policies as medically required and medically appropriate for diagnosis and treatment of an illness or injury under professionally recognized standards of health care. (Again read your policy and determine how "medically necessary" is defined.) Treatments such as GIFT, IVF, ZIFT/PROST have been off the American Medical Associations experimental list since the late 1980s. If the insurance company gives you another reason, you should review your policy carefully and determine if the reason given is consistent with the insurance contract. Once the insurance company has identified to you the reasons for the denial of the claim, you can then present evidence to it that its reasoning is incorrect. This may include a letter from your doctor explaining the reasons for a particular procedure. You should also write a letter to the insurance company explaining why you believe its denial was inappropriate. You should attempt to make all contacts with the insurance company through written communication. If you should need to contact them by telephone, take extensive notes, which should include the date and time called, who you spoke with and what was said. VIOLATION OF DISCRIMINATION LAWS If it appears that the exclusion is valid under the insurance contract, it may nevertheless be invalid under Federal discrimination laws. These laws are currently being tested in some courts throughout the country as to how they should be applied to persons with infertility. The law is not settled and the result may be different between jurisdiction. The Americans with Disabilities Act (ADA), which was passed in 1991, provides that it is unlawful to discriminate against persons with disabilities. To be disabled under the ADA, a person must have a physiological disorder that affects a major life activity. The definition of a disability includes any physiological disorder or condition of the reproductive system. The United States Supreme Court has ruled that reproduction is a major life activity under the ADA. Thus, infertility is a disability. It is unlawful under the ADA to treat persons with disabilities differently than other employees in the terms or conditions of employment, including fringe benefits. Although the ADA has a specific section which protects some insurance plans, the Equal Employment Opportunity Commission (EEOC) has issued guidelines in interpreting this provision that are vary favorable to persons whose infertility insurance excludes infertility. The Guidelines provide that in order to have the protections of the insurance provision for a disability-based distinction, the insurer must establish that it is financially impossible to include the coverage. Employers and insurance carriers cannot establish this. Studies on the cost of infertility coverage have clearly shown that the costs are minimal. Various studies have revealed the costs to be in the range of $.23 to $1.50 per month per family policy less than the cost of a sack lunch. Unfortunately, the insurance provision of the ADA remains unsettled in the Courts. Some Courts have followed the EEOCs interpretation but have limited its application. Other Courts have held that this provision means that when insurance is involved, the employer must discriminate in a non-fringe benefit aspect of employment, i.e. the person is not hired or fired because of the cost implications for insurance coverage. Title VII of the Civil Rights Act provides that sex discrimination includes discrimination based on pregnancy, childbirth or related medical conditions. It has been held that infertility is a medical condition related to pregnancy. Therefore, an employer cannot treat you any differently than its other employees as far as providing insurance benefits, time off from work, etc. The advantage of the PDA over the ADA is that there is no provision relating to insurance under the PDA. Thus, the costs of providing the coverage are irrelevant, the law simply prohibits discrimination in the terms or conditions of employment, including fringe benefits. You must keep in mind that to recover under these laws you will most likely have to take legal action against your employer. This prospect is very frightening for most people in that they are afraid their employer will retaliate by terminating their employment. This is a legitimate fear, but it is illegal to retaliate against any person who has made a claim of discrimination. There is little that can be done to stop the retaliation. The only remedy for such retaliation is to bring an additional claim for the retaliation and ask for reinstatement or money damages. It may be possible to bring an action directly against the insurance carrier under the ADA. However, there are only a few court cases that interpret how the law is to be applied to insurance policies. Again, the Courts are in disagreement. TIME OFF FROM WORK The provisions of the ADA and PDA would also protect you when you need to take time off work for treatments. Your employer must treat you the same as all other employees when making decisions as to utilization of sick leave, vacation leave, or other provisions for time off from work for medical reasons. In addition, under the Family Medical Leave Act, any employer that has 50 or more employees must give you time off from work for medical treatment. There are certain limitations on this requirement, and it has not been conclusively determined whether or not infertility would be a covered condition. However, there is a good probability that it would be included under the clear language of the statute. If your employer is reluctant to give you time off from work to obtain your treatments, then you should specifically tell your employer (assuming that there are more than 50 employees) that you are requesting time off pursuant to the Family Medical Leave Act, and ask your supervisor what you need to do to obtain such leave. Generally, you will be given a form to complete which will require a statement from your doctor that it is necessary for you to miss work. This is only a summary of some of the legal protections you may have under various federal laws. You may also have some protection under your state law. If you have any concerns, it is highly recommended that you contact an attorney. Most attorneys will provide a free initial consultation. You should try to locate an attorney that specializes in the area of employment and/or insurance law. Pamela Prager is a frequent chat guest on INCIID. Prior to each event, Pam strongly suggests that each participant read her fact sheet and their individual Insurance Policy to be better prepared to ask and answer questions. If you missed Pam's previous chat sessions, you can  HYPERLINK "http://www.inciid.org/transcripts/index.html" read the transcripts. Pamela Prager is an attorney with the law firm of: Finley, Alt, Smith, Scharnberg, Craig, Hilmes & Gaffney, P.C. 604 Locust, Suite 400 Des Moines, Iowa Telephone: 515/288-0145 Fax: 515/288-2724 E-Mail:  HYPERLINK "mailto:Pprager@Finleylaw.com" pprager@Finleylaw.com  INCLUDEPICTURE "http://www.inciid.org/images/bluebar.gif" \* MERGEFORMATINET  pcos information Ladies Home Journal March, 2000 The DANGER Within.(Polycystic Ovary Syndrome) Author/s: Kathleen Mcauliffe It's the leading cause of female infertility. As many as five million U.S. women have it. Could you be at risk for Polycystic Ovary Syndrome? Beth Kushnick's problem began during puberty. Her friends got their periods; she didn't. During her late teens, her weight shot up by forty pounds. When she finally began to menstruate, her periods were long and heavy; then she'd go for six months at a stretch without one. Her twenties were just as bad: She was plagued by constant fatigue and tender and bloated ovaries. Kushnick, now thirty-nine and working in the film industry in New York, knew something was wrong. But visits to two gynecologists and two endocrinologists provided no answers. "Basically," she says, "I was put on the Pill to regulate my periods and sent on my way." Frustrated, Kushnick took action, contacting women's health organizations and combing medical libraries for clues. She finally deduced she was suffering from Polycystic Ovary Syndrome (PCOS), a hormonal and metabolic condition. After five years of searching, she discovered the National Organization for Rare Disorders, in New Fairfield, Connecticut, which put her in contact with other women who shared similar symptoms. "What a relief it was to find out I wasn't alone," says Kushnick. Though many women have never heard of it, PCOS affects as many as five million women in the United States (or one in ten), and is the leading cause of female infertility. It is, says Kushnick, "absurdly out of place on a list of rare disorders." Left untreated, it can cause life-threatening complications. PCOS was first recognized more than sixty years ago (and initially was called Stein-Leventhal syndrome after the two doctors who discovered it). But it is a complicated condition frequently overlooked by physicians. Generic symptoms are part of the problem. Erratic periods, acne, hirsutism (excess hair on the face and body), and balding on the crown of the head--caused by elevated levels of male hormones--are common. Sixty percent of women with PCOS are overweight. All of these symptoms, however, can be caused by other disorders. And to complicate matters, not all cases look alike: One woman's symptoms may scream PCOS--obesity, raging acne, heavy facial hair. Another patient--a woman of normal weight whose only complaint is a longer-than-normal menstrual cycle--may be more difficult to diagnose. Even the symptom that gives the disorder its modern name--undeveloped eggs in the ovaries that appear as multiple cysts in ultrasound images--doesn't affect every woman with PCOS. "In my experience, as many as half of women walking around with PCOS don't know it," says Roger A. Lobo, M.D., chairman of the department of obstetrics and gynecology at Columbia University College of Physicians and Surgeons, in New York City. Sometimes a patient with PCOS is diagnosed in her teens--perhaps by a gynecologist who's able to piece together disparate symptoms, or by a dermatologist who's "particularly aware of what male hormones can do to the skin," explains Walter Futterweit, M.D., a clinical professor of medicine in the division of endocrinology at Mount Sinai School of Medicine, in New York City. Other women don't discover they have PCOS until they have trouble conceiving a child. But new research suggests that PCOS is much more than just a fertility problem. Scientists have discovered that women with the disorder are unable to use insulin efficiently. "PCOS is a metabolic disturbance with far-ranging health effects, increasing a woman's risk of diabetes, heart disease and endometrial cancer," says John Nestler, M.D., professor of medicine and chairman of the division of endocrinology and metabolism at Virginia Commonwealth University, in Richmond. Fortunately, once diagnosed, the disorder can be controlled. Mild cases can be managed with appropriate diet and exercise to help correct the metabolic problem at its root. Drugs have proved effective in helping to regulate the menstrual cycle, counter excess hair growth, even to restore fertility. Being informed is the key. There are more resources for the disorder now than when Kushnick was looking twelve years ago--thanks, in part, to a growing network of PCOS women. "I started chatting with them over the phone, and followed up with packets of medical literature I'd collected about PCOS," says Kushnick. Soon she was overwhelmed with requests. Today, she heads the PCOS support group of the American Infertility Association, a nonprofit organization based in New York. Last October, she chaired a conference to educate patients on PCOS at Mount Sinai. Doctors need to be informed, too. "Traditionally, reproductive disorders have not been part of general medical training," says Andrea Dunaif, M.D., an internist endocrinologist specializing in reproduction at Brigham and Women's Hospital, in Boston. "A lot of obstetricians, gynecologists and internists tell PCOS women they're too fat, put them on the Pill, and that's it. There's often a lack of appreciation of the long-term consequences." ARE YOU AT RISK? Though the underlying cause of PCOS remains a mystery, medical researchers believe that insulin resistance sets off a chain reaction that throws hormones out of kilter. As the disorder progresses, certain cells in the body grow less responsive to insulin and blood-sugar levels climb, which causes the pancreas to step up insulin production. In turn, the excess insulin stimulates the ovaries and adrenal gland to churn out testosterone and other androgens, which can disrupt ovulation. Depending on a woman's sensitivity to male hormones, she may develop acne and male-pattern hair growth or loss. Failure to properly utilize insulin also can slow metabolism, which helps explain why so many PCOS women are overweight, says Dunaif. At the same time, she notes, it's likely the male hormones increase appetite. But that's not the worst of it. A PCOS woman continues to produce estrogen, but stops manufacturing progesterone. This imbalance causes the lining of the uterus to continue thickening, a condition that can invite endometrial cancer. Estrogen also stimulates the pituitary gland to release luteinizing hormone (LH), which signals the ovaries to release an egg. In normal functioning, after the egg is released, levels of LH drop; in women with PCOS, they remain elevated. PCOS can culminate in diabetes and cardiovascular disease. Women with the disorder tend to have low HDLs (good cholesterol), high LDLs (bad cholesterol) and elevated triglycerides--factors that make them prime candidates for heart attack and stroke. Experts advise any woman with an irregular menstrual cycle to be evaluated for PCOS. Family history of the disease is also a risk factor. In a study of around one hundred families, Dunaif found that 50 percent of sisters of PCOS women either have the disorder or show signs of it. A DIFFICULT BALANCING ACT Because the range and severity of symptoms vary enormously, no treatment fits all patients. If the woman is overweight, doctors first recommend lifestyle changes--regular exercise and a low-calorie, low-carbohydrate diet. Slimming down can help restore fertility and lower male hormone levels for some patients, experts say. Long a mainstay of PCOS therapy, oral contraceptives are still used to regulate periods and suppress excess male hormones, which can clear acne and alleviate hirsutism. More important, they reduce the risk of endometrial cancer. (Women with PCOS should avoid forms of the Pill that contain a progestin called Levonorgestrel, which mimics male hormones, potentially worsening symptoms.) Spironolactone is commonly prescribed with the Pill for its anti-androgen properties, which help to manage severe hirsutism and replenish hair on the head. (Women who are or plan to become pregnant should not take spironolactone.) But the latest approach to PCOS therapy is drugs--such as Glucophage and Rezulin--that treat the insulin resistance believed to be at the core of the disorder. Glucophage can help patients lose ten to fifteen pounds, and both drugs lower testosterone levels, which decreases acne and hirsutism. The medications have also been shown to reduce circulating levels of LH and insulin--changes that experts hope may translate into increased protection against diabetes and heart disease. Finally, Glucophage and Rezulin frequently restore ovulation. In clinical trials of Glucophage, PCOS women who'd been unable to conceive by any other method got pregnant. Another approach for PCOS sufferers unable to conceive is the fertility drug clomiphene citrate (Clomid, Milophene or Serophene). If three cycles of the medication fail to induce ovulation, the next step is injections of gonadotropin, which are pituitary hormones that regulate ovulation. Because those with PCOS may be at higher risk than others for complications of fertility treatments--multiple births, miscarriage and ovarian hyperstimulation, a potentially life-threatening condition--they should choose fertility specialists with expertise in treating these conditions. "My doctor was very conservative, stepping up the dose of the fertility drugs in tiny increments to avoid serious side effects," says a thirty-five-year-old PCOS patient who requested anonymity. The cautious approach paid off. After three rounds of Clomid and four rounds with gonadotropin, her pregnancy was complication-free, and she now has a healthy two-year-old girl. Her success story is not unique: The vast majority of PCOS women can have a baby with fertility therapy. The latest development is an experimental drug, INS-l, an insulin-sensitizing agent similar to Glucophage and Rezulin, that has shown promising results in clinical trials. After six to eight weeks on the drug, 86 percent of PCOS patients ovulated, compared with 27 percent of women in the placebo group, according to a study reported last April in The New England Journal of Medicine. And no side effects were reported. LIVING WITH PCOS Even with treatment, having PCOS can be an ordeal. The most distressing aspect, according to a survey of patients, is the disorder's visible markers, which can be especially devastating for young women. "Freakish" is how a thirty-nine-year-old Sacramento-based journalism student describes her early twenties, when PCOS threw her a quadruple whammy: Her weight ballooned, and she developed acne, facial hair and bald patches on the crown of her head. Lacking medical insurance, she went to the California Department of Health Services, which refused to cover electrolysis. She was able to get another state agency to cover four hundred hours of facial electrolysis, and she no longer endures the indignity of a beard. For now, PCOS's effects aren't easily erased, but most sufferers agree that education and emotional support can help. "The feeling of solidarity is so empowering," says Kushnick. Kathleen McAuliffe is a frequent contributor to Ladies' Home Journal. 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