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C O M M E N T S A N D C O N T R O V E R S I E S Consistency in Insurance Coverage for IatrogenicConditions Resulting From Cancer TreatmentIncluding Fertility Preservation Lisa Campo-Engelstein, Oncofertility Consortium, Northwestern University, Chicago, IL harm. (Another factor is the static understanding of the body that INTRODUCTION
dominates medicine and science. Briefly, this is the idea that the body Insurance companies generally cover treatment for iatrogenic condi- stays the same over time and disease is aberration that must be eradi- tions that result from cancer treatment, including treatment for con- cated to restore the body to its natural and “normal” state. See Ecken- ditions that may be considered elective when “naturally” occurring wiler1 for a discussion of how this static understanding of the body has (note that in this article, I am using the word “iatrogenic” to refer only lead to women’s exclusion from clinical research trials.) to nonnegligent treatment-induced conditions). One notable excep- Certain acts and laws were passed to institutionalize the med- tion is fertility preservation for iatrogenic infertility. In this brief arti- ical realm’s responsibility for iatrogenic harms. For instance, the cle, I argue that for insurance companies to maintain consistency, they Women’s Health and Cancer Rights Act, which was passed in 1998, should cover fertility preservation treatment for female patients with mandates that if health insurance companies cover the costs of mas- cancer because it does not differ significantly from other treatments tectomy for cancer patients, then they must also cover the costs of for iatrogenic conditions they currently cover for women, such as breast reconstruction for mastectomy patients.2 Health care providers breast reconstruction after mastectomy and wigs for alopecia. (Al- and insurance companies sometimes assume responsibility for iatro- though my focus in this article in on female fertility preservation, one genic harms by the way they code for billing. For example, breast could presumably make a similar argument that male fertility preser- reconstruction surgery after a mastectomy is coded as cancer treat- ment rather than under elective treatment. By allowing treatments for One reason many insurance companies refuse to cover fertility iatrogenic conditions to be subsumed into the larger category of dis- preservation treatments, and infertility treatments more generally, ease treatment, insurance companies are tacitly accepting financial is that they are often viewed as elective procedures, not medically responsibility to cover these treatments. In addition to breast recon- necessary ones. When it comes to iatrogenic infertility, however, the struction surgery, there are other treatments that may not be covered controversy over whether fertility preservation is a medically nec- by insurance when the disease is naturally occurring (in part because essary treatment should be moot because other so-called elective treatment is not seen as medically necessary), but are covered when procedures are covered when they are iatrogenic, even if they are not iatrogenic; for example, wigs after cancer treatment are usually cov- covered when naturally occurring. Because my focus is on iatro- ered, whereas wigs for thinning hair or cosmetic reasons often are not.
genic conditions—many of which, as I will discuss in this article, The same pattern of insurance coverage exists in the fertility/ are generally not considered medical conditions when they are not infertility realm. Many insurance companies do not cover infertility or iatrogenic—I put aside the debate about whether infertility should be fertility preservation treatments for some of the following reasons: classified as a “real” disease. One example of an iatrogenic condition in/fertility treatments are experimental, they do not treat an underly- typically covered by insurance is breast reconstruction after lumpec- ing disease but rather produce a desired outcome (ie, a child), and they tomy or mastectomy. Although having only one breast is rarely, and are an elective procedure, not a medical one.3 An exception to the lack perhaps never, a naturally occurring condition, naturally occurring of coverage is iatrogenic infertility. Although no formal studies have breast asymmetry is quite common. Most would not classify breast been done, there is anecdotal evidence that insurance companies will asymmetry as a medical problem that insurance should cover. How- sometimes take financial responsibility for iatrogenic infertility. At the ever, when breast asymmetry results from a lumpectomy, surgery to Northwestern University branch of the Oncofertility Consortium achieve symmetry is usually covered regardless of whether the patient (www.oncofertility.northwestern.edu), a national, interdisciplinary had symmetric breasts beforehand. This discrepancy in coverage be- initiative designed to explore the reproductive options for patients tween iatrogenic and naturally occurring breast asymmetry can be diagnosed with cancer or other serious diseases, female patients with explained, at least in part, by looking at the harm principle through the cancer have the option to chose a fertility preservation method— lens of responsibility: because members of the medical profession embryo, egg, or ovarian tissue cryopreservation— before beginning caused the harm—something they are not supposed to do—the med- cancer treatment. These fertility preservation treatments have been ical profession as a whole must take responsibility for mitigating the billed under a primary diagnosis of cancer and a secondary diagnosis 2010 by American Society of Clinical Oncology Journal of Clinical Oncology, Vol 28, No 8 (March 10), 2010: pp 1284-1286 Information downloaded from jco.ascopubs.org and provided by Galter Health Sciences Library on March 22, 2010 from Copyright 2010 by the American Society of Clinical Oncology. All rights reserved. Comments and Controversies
of procreative management. Although there have been many appeals and dental evaluations for osteoradionecrosis. Another example that and much negotiation, so far insurance companies have covered this is more analogous with fertility preservation that providers sometimes treatment for all of the patients (M. Gerrity, personal communication, recommend is storing one’s own blood as a prophylactic precaution in June 2009). Fertile Hope, a nonprofit organization that provides re- case of an emergency transfusion. Those who seek fertility preserva- productive information and support to patients with cancer and sur- tion treatment are similarly motivated as those who store blood: in a vivors, also notes that some patients with cancer have been able to worst-case scenario—patients find themselves infertile after cancer convince their insurance companies to cover fertility preservation treatment—these patients have a reserve of gametes to use to have by claiming that insurance companies cover side effects of all other medically necessary cancer treatment and that infertility should Although treatment for most iatrogenic conditions generally oc- curs very soon or immediately after cancer treatment, in the case of Some may argue that insurance companies should not cover fertility preservation, frozen embryos, eggs, and ovarian tissue may not these fertility preservation methods for patients with cancer because be used for many years, even decades. However, according to the this treatment differs in significant ways from treatment for other principle of moral neutrality, the timing of a harm has no moral iatrogenic conditions. I will explore and respond to five objections.
significance.8 Consequently, the time at which a woman experiences First, egg and ovarian tissue cryopreservation are considered the harm of iatrogenic infertility—whether it is 6 months or 6 years experimental procedures and insurance companies rarely, and per- after treatment— does not change the degree of harm.
haps should not, cover experimental procedures. Although it is true Fourth, when insurance companies cover iatrogenic conditions that the American Society for Reproductive Medicine still defines egg that would not be covered when naturally occurring (eg, breast sur- cryopreservation as experimental,5 this technology, especially egg gery and wigs), part of the reason for doing so is because the results of freezing using vitrification, is improving rapidly, and some in the the treatment, which is visible to both the patient and others, normal- scientific community no longer view it as experimental.6 Additionally, izes the patient’s gendered body and identity. Women without certain egg and ovarian tissue cryopreservation are the only available options gender markers, like breasts or head hair, often feel less feminine, for young and/or single women to be able to have a child with a future which affects their sense of self and quality of life. Moreover, others in partner, not a sperm donor. Creating embryos, the only mature tech- society may feel uncomfortable with and act differently toward a nology, run the risk that the biologic father could oppose transfer. As a woman whose physical appearance does not match the “normal” matter of social justice, we need to have fertility preservation options female body. Yet, fertility preservation treatment also normalizes available to women independent of men to ensure that a woman will women’s gendered body and identity in a visible way. In addition to be able to have a biologic child and with the man she chooses.
the fact that motherhood is an important part of many women’s Second, patients with cancer do not meet the definition of infer- identity, there is a social expectation that women have children. Preg- tility. When insurance companies do cover infertility treatment, it nancy is one of the most visible symbols of femininity, as is a woman generally only applies to those diagnosed as infertile, which usually is defined as the inability to conceive after 1 year of regular and unpro- Fifth, fertility preservation treatment is inherently more socially tected heterosexual intercourse. Although patients with cancer are not and ethically complex because it not only affects the individual patient, technically infertile at the time when fertility preservation treatment but it also involves and impacts her current or future partner, as well as would take place (right before the commencement of cancer treat- her family (eg, her parents, children, and so on) and future offspring, ment), for many, infertility is an unfortunate inevitability. Although it in ways that treatment for other iatrogenic conditions does not. Al- is difficult to precisely predict one’s chance of infertility, some treat- though fertility preservation treatment is indeed more socially and ments generally yield infertility rates of 80% or more. Indeed, some ethically complex, I do not think this difference is pertinent to discus- estimate that up to 90% of patients with cancer in their reproductive sions of insurance coverage. Insurance companies often cover socially years will be rendered infertile from treatment.7 Although it is true that and ethically complex procedures outside of assisted reproductive patients with cancer do not fit the standard definition of infertility, this technology (ART), including corrective surgery for intersex infants, does not mean that their need for infertility treatment is any less. In fetal surgery, and genetic testing for hereditary diseases. The social and fact, in some ways, their need for infertility treatment is greater. Unlike ethical complexity of the treatment should not factor into coverage traditional infertility patients who can continue receiving infertility decisions, though it may be an indicator that patients need extra treatment until they conceive, patients with cancer often only have one counseling before making treatment decisions.
shot at preserving their fertility as it must occur before they begin In short, fertility preservation treatment for patients with cancer cancer treatment. The unique situation that patients with cancer face does not differ in morally significant ways from treatments for other reveals the traditional definition of infertility as too limited, for it iatrogenic conditions that are currently covered by insurance and thus cannot account for fertility preservation needs of those with foresee- its exclusion from insurance coverage is unjustified. As the field of oncofertility continues to develop and fertility preservation options Third, insurance companies tend to cover iatrogenic conditions continue to progress, insurance companies will increasingly be con- that already exist, like hair loss from chemotherapy, or will almost fronted with how to handle iatrogenic infertility for patients with certainly exist, like loss of an entire breast after mastectomy, not cancer. I have argued that insurance companies should, for the sake of conditions that may (or may not) exist in the future, like infertility.
consistency, cover fertility preservation treatment for patients with However, a low probability of occurrence should not lead providers to cancer. Given the controversy surrounding reproductive technolo- forgo prophylactic procedures to avoid iatrogenic conditions. And, in gies, this suggestion may be met with fierce opposition. However, it is fact, providers typically provide treatments to prevent iatrogenic con- time for insurance companies to stop relegating reproductive technol- ditions that may (or may not) occur, such as antiemetics for nausea ogies to a separate realm outside of “real” healthcare, especially when 2010 by American Society of Clinical Oncology Information downloaded from jco.ascopubs.org and provided by Galter Health Sciences Library on March 22, 2010 from Copyright 2010 by the American Society of Clinical Oncology. All rights reserved. Lisa Campo-Engelstein
they cover treatment for conditions that are similar to infertility. The after mastectomy, is a significant quality-of-life issue for patients with fact that insurance companies have begun covering fertility preserva- cancer. Moreover, such a mandate would move away from many tion treatment for patients with cancer gives hope that fertility and insurance companies’ classification of ART as so-called boutique infertility treatment is finally being taken seriously by insurance com- medicine rather than understanding infertility as a serious disease panies. Yet this coverage is done secretly on a case-by-case basis rather worthy of medical treatment. Although there is a growing consensus than with a blanket policy, which implies that insurance companies among health organizations (including the US Centers for Disease are still not ready to publicly assume financial responsibility for iatro- Control and Prevention and the WHO) and medical professionals genic infertility (M. Gerrity, personal communication, June 2009).
that infertility is a disease as well as a public health matter, many Perhaps a state or federal mandate, modeled after the Women’s insurance companies treat ART like they fall outside the scope of real Health and Cancer Rights Act, is necessary for insurance companies to medicine. Currently, 14 states have some type of ART mandate. State begin openly and universally covering treatment for iatrogenic infer- mandates specifically for iatrogenic infertility could serve as a stepping tility. On the patient level, a mandate would open the door for more stone toward state mandates for infertility more generally.
discussions between patients and providers about fertility preserva- AUTHOR’S DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST
tion treatment. According to recent studies, more than half of female The author(s) indicated no potential conflicts of interest.
and male patients with cancer of reproductive age have no memory of REFERENCES
discussing fertility during their initial oncology appointments. For 1. Eckenwiler LA: Pursuing reform in clinical research: Lessons from women’s
those patients who did have such discussions, many were dissatisfied experience. J Law Med Ethics 27:158-170, 1999 with both the quality and the amount of information provided. Edu- 2. US Department of Labor: Your rights after a mastectomy. Women’s Health
& Cancer Rights Act of 1998. http://www.dol.gov/ebsa/publications/whcra.html cating providers about ART is key to engendering fertility discussions.
3. The Harvard Law Review Association: In vitro fertilization: Insurance and
However, it may not be enough. Some providers do not discuss infer- consumer protection. Harvard Law Review 109:2092-2109, 1996 tility because they believe their patients will not be able to afford 4. Fertile Hope: FAQs: Women http://www.fertilehope.org/learn-more/cancer-
ART.6 A mandate for coverage of iatrogenic infertility would alle- 5. ASRM: State Infertility Insurance Laws: Infertility, reproduction, meno-
viate this concern, thereby propelling providers to talk about ART pause, andrology, endometriosis, diagnosis and treatment. http://www.asrm.org/ with patients of all socioeconomic statuses. Indeed, a mandate would provide greater ART access to patients from lower socioeco- 6. Leslie M: Melting opposition to egg freezing. Science 316:388-389, 2007
7. Lee SJ, Schover LR, Partridge AH, et al: American Society of Clinical
nomic backgrounds, to patients without insurance, and/or to pa- Oncology recommendations on fertility preservation in cancer patients. J Clin tients who do not have patient advocates to help them secure 8. Rawls J: A Theory of Justice. Cambridge, MA, Harvard University Press,
On the broader social level, a mandate would symbolize recogni- tion of the importance of fertility for patients with cancer; it would DOI: 10.1200/JCO.2009.25.6883; published online ahead of print at acknowledge that fertility preservation, just like breast reconstruction 2010 by American Society of Clinical Oncology Information downloaded from jco.ascopubs.org and provided by Galter Health Sciences Library on March 22, 2010 from Copyright 2010 by the American Society of Clinical Oncology. All rights reserved.

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