signal boosting: Chronic Fatigue Syndrome /not connected to/ Rape as a pre-existing condition?
first two from 
rushthatspeaks
Chronic Fatigue Syndrome caused by a human retrovirus?
October 21, 2009
Op-Ed Contributor
A Case of Chronic Denial
By HILLARY JOHNSON
EARLIER this month, a study published in the journal Science answered a question that medical scientists had been asking since 2006, when they learned of a novel virus found in prostate tumors called xenotropic murine leukemia virus-related virus, or XMRV: Was it a human infection?
XMRV is a gammaretrovirus, one of a family of viruses long-studied in animals but not known to infect people. In animals, these retroviruses can cause horrendous neurological problems, immune deficiency, lymphoma and leukemia. The new study provided overwhelming evidence that XMRV is a human gammaretrovirus - the third human retrovirus (after H.I.V. and human lymphotropic viruses, which cause leukemia and lymphoma). Infection is permanent and, yes, it can spread from person to person (though it is not yet known how the virus is transmitted).
That would have been news enough, but there was more. XMRV had been discovered in people suffering from chronic fatigue syndrome, a malady whose very existence has been a subject of debate for 25 years. For sufferers of this disease, the news has offered enormous hope. Being seriously ill for years, even decades, is nightmarish enough, but patients are also the targets of ridicule and hostility that stem from the perception that it is all in their heads. In the study, 67 percent of the 101 patients with the disease were found to have XMRV in their cells. If further study finds that XMRV actually causes their condition, it may open the door to useful treatments. At least, it will be time to jettison the stigmatizing name chronic fatigue syndrome.
The illness became famous after an outbreak in 1984 around Lake Tahoe, in Nevada. Several hundred patients developed flu-like symptoms like fever, sore throat and headaches that led to neurological problems, including severe memory loss and inability to understand conversation. Most of them were infected with several viruses at once, including cytomegalovirus, Epstein-Barr and human herpesvirus 6. Their doctors were stumped. The Centers for Disease Control and Prevention, the nation’s presumed bulwark against emerging infectious diseases, dismissed the epidemic and said the Tahoe doctors “had worked themselves into a frenzy.” The sufferers, a C.D.C. investigator told me at the time, were “not normal Americans.”
When, by 1987, the supposed hysteria failed to evaporate and indeed continued erupting in other parts the country, the health agency orchestrated a jocular referendum by mail among a handful of academics to come up with a name for it. The group settled on “chronic fatigue syndrome” - the use of “syndrome” rather than “disease” suggested a psychiatric rather than physical origin and would thus discourage public panic and prevent insurers from having to make “chronic disbursements,” as one of the academics joked.
An 11th-hour plea by a nascent patient organization to call the disease by the scientific name used in Britain, myalgic encephalomyelitis, was rejected by the C.D.C. as “overly complicated and too confusing for many nonmedical persons.”
Had the agency done nothing in response to this epidemic, patients would now be better off. The name functioned as a kind of social punishment. Patients were branded malingerers by families, friends, journalists and insurance companies, and were denied medical care. (It’s no coincidence that suicide is among the three leading causes of death among sufferers.) Soon the malady came to be widely considered a personality disorder or something that sufferers brought upon themselves. A recent study financed by the C.D.C. suggested that childhood trauma or sexual abuse, combined with a genetic inability to handle stress, is a key risk factor for chronic fatigue syndrome.
Many people don’t realize how severe this illness can be. It is marked by memory and cognition problems, and physical collapse after any mental or physical exertion. The various co-infections that occur only make matters worse. Many patients are bedridden. And recovery is rare. A significant number of patients have been ill for more than two decades.
Dr. Nancy Klimas, an immunologist at the University of Miami School of Medicine who treats AIDS and chronic fatigue syndrome, remarked in The Times last week that if given the choice she would prefer to have AIDS: “My H.I.V. patients for the most part are hale and hearty,” she said, noting that billions of dollars have been spent on AIDS research. “Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.”
Congress has appropriated money for research on chronic fatigue syndrome, too, though in far smaller amounts, but the C.D.C. has seemed unwilling to spend it productively. A decade ago, investigations by the inspector general for the Department of Health and Human Services and what was then called the General Accounting Office revealed that for years government scientists had been funneling millions meant for research on this disease into other pet projects.
As public health officials focused on psychiatric explanations, the virus apparently spread widely. In the new study, active XMRV infections were found in 3.7 percent of the healthy controls tested. Roughly the same degree of infection in healthy people has been found in the prostate research. If this is representative of the United States as a whole, then as many as 10 million Americans may carry the retrovirus.
It is estimated that more than a million Americans are seriously ill with the disease. (Not everyone infected with XMRV will necessarily get chronic fatigue syndrome - in the same way that not all of the 1.1 million Americans infected with H.I.V. will get AIDS.)
Hints that a retroviral infection might play a role in chronic fatigue syndrome have been present from the beginning. In 1991, Dr. Elaine DeFreitas, a virologist at the Wistar Institute in Philadelphia, found retroviral DNA in 80 percent of 30 chronic fatigue patients. The C.D.C. went so far as to try to replicate her effort, but refused to follow her exacting methods for finding the virus. In addition, the centers’ blood samples became contaminated, and some people at the agency said that administrators ended the research prematurely. Rather than admit any such failure, the C.D.C. publicly criticized Dr. DeFreitas’s findings.
That episode had a chilling effect on other researchers in the field, and the search for the cause was largely abandoned for 20 years.
Now, Judy Mikovits, the retrovirus expert at the Whittemore Peterson Institute, in Reno, Nev., who led the recent study, has revisited the cold case. Not surprisingly, the institute is private, created by the parents of a woman who suffers from chronic fatigue syndrome. But Dr. Mikovits collaborated with scientists at the National Cancer Institute and the Cleveland Clinic.
When she began her work on this disease in 2006, Dr. Mikovits, a 22-year veteran of the National Cancer Institute, knew little about chronic fatigue syndrome. But she was intrigued that an unusually high number of patients being followed by a Nevada doctor were suffering rare lymphomas and leukemias; at least one had died. And she was also impressed that the doctor, Dan Peterson, had built an extraordinary repository of more than 8,000 chronic fatigue syndrome tissue samples going back as far as 1984.
“My hypothesis was, ‘This is a retrovirus,’ and I was going to use that repository to find it,” Dr. Mikovits told me.
What she found was live, or replicating, XMRV in both frozen and fresh blood and plasma, as well as saliva. She has found the virus in samples going back to 1984 and in nearly all the patients who developed cancer. She expects the positivity rate will be close to 100 percent in the disease.
“It’s amazing to me that anyone could look at these patients and not see that this is an infectious disease that has ruined lives,” Dr. Mikovits said. She has also given the disease a properly scientific new name: X-associated neuroimmune disease.
For patients who have been abandoned to quackish theories and harsh ideologies about their illness for 25 years, the dismantling of “chronic fatigue syndrome” can’t come soon enough.
Hillary Johnson is the author of “Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic.”
(as rush says:) Utterly rage-inducing link of the day:" Having been raped as a pre-existing condition. If you take anti-HIV drugs after having been raped, you're probably uninsurable after that.
Rape Victim's Choice: Risk AIDS or Health Insurance?
By Danielle Ivory
Huffington Post Investigative Fund
Created 2009-10-21 13:38
Women Who Are Attacked Can Get Tangled in the Insurance System
Christina Turner feared that she might have been sexually assaulted after two men slipped her a knockout drug. She thought she was taking proper precautions when her doctor prescribed a month’s worth of anti-AIDS medicine.
Only later did she learn that she had made herself all but uninsurable.
Turner had let the men buy her drinks at a bar in Fort Lauderdale. The next thing she knew, she said, she was lying on a roadside with cuts and bruises that indicated she had been raped. She never developed an HIV infection. But months later, when she lost her health insurance and sought new coverage, she ran into a problem.
Turner, 45, who used to be a health insurance underwriter herself, said the insurance companies examined her health records. Even after she explained the assault, the insurers would not sell her a policy because the HIV medication raised too many health questions. They told her they might reconsider in three or more years if she could prove that she was still AIDS-free.
Stories of how victims of sexual assault can get tangled in the health insurance system have been one result of the Huffington Post Investigative Fund’s citizen journalism project [1], which is calling on readers to provide information and anecdotes about the inner workings of the insurance industry. The project aims to uncover details and data that can inform the larger debate over how to fix the nation’s health care system. As the Investigative Fund reported in September [2], health insurance companies are not required to make public their records on how often claims are denied and for what reasons.
Some women have contacted the Investigative Fund to say they were deemed ineligible for health insurance because they had a pre-existing condition as a result of a rape, such as post traumatic stress disorder or a sexually transmitted disease. Other patients and therapists wrote in with allegations that insurers are routinely denying long-term mental health care to women who have been sexually assaulted.
Susan Pisano, spokeswoman for the health insurance industry’s largest trade group, America’s Health Insurance Plans, said insurers do not discriminate against victims of sexual assault and ordinarily would not even know if a patient had been raped.
"These issues you are bringing up, they deserve to be brought up,” said Pisano. "People who have experienced rape and sexual assault are victims and we want them to be in a system where everyone is covered."
Turner’s story about HIV drugs is not unusual, said Cindy Holtzman, an insurance agent and expert in medical billing at Medical Refund Service, Inc. of Marietta, Ga. Insurers generally categorize HIV-positive people as having a pre-existing condition and deny them coverage. Holtzman said that health insurance companies also consistently decline coverage for anyone who has taken anti-HIV drugs, even if they test negative for the virus. “It’s basically an automatic no,” she said.
Pisano, of the insurance trade group, said: “If you put down on a form that you are or were taking anti-HIV drugs at any time, they [the insurance companies] are going to understand that you are or were in treatment for HIV, period. That could be a factor in determining whether you get coverage."
Some doctors and nurses said that the industry’s policy is not medically sound. “The chance of a rape victim actually contracting AIDS is very low. It doesn’t make any sense to use that as a calculus for determining who get health insurance,” said Dr. Alex Schafir, faculty instructor at Providence St. Vincent Hospital in Portland, Ore.
Nurses who deal with sexual assault cases say the industry’s policy creates a significant problem for those treating women who have been assaulted. “It’s difficult enough to make sure that rape victims take the drugs,” said Diana Faugno, a forensic nurse in California and board director of End Violence Against Women International. “What are we supposed to tell women now? Well, I guess you have a choice - you can risk your health insurance or you can risk AIDS. Go ahead and choose.”
Turner, now a life and casualty insurance agent, said she went without health coverage for three years after the attack. She second-guesses her decision to take the HIV drugs. “I’m going to be penalized my whole life because of this,” she said.
Several women told the Investigative Fund that after being sexually assaulted they had been denied care or ruled ineligible for health insurance because of what were deemed pre-existing conditions stemming from their assaults -- particularly post traumatic stress disorder, or PTSD.
A 38-year-old woman in Ithaca, N.Y., said she was raped last year and then penalized by insurers because in giving her medical history she mentioned an assault she suffered in college 17 years earlier. The woman, Kimberly Fallon, told a nurse about the previous attack and months later, her doctor’s office sent her a bill for treatment. She said she was informed by a nurse and, later, the hospital’s billing department that her health insurance company, Blue Cross Blue Shield, not only had declined payment for the rape exam, but also would not pay for therapy or medication for trauma because she “had been raped before.”
Fallon says she now has trouble getting coverage for gynecological exams. To avoid the hassle of fighting with her insurance company, she goes to Planned Parenthood instead and pays out of pocket.
A New Mexico woman told the Investigative Fund she was denied coverage at several health insurance companies because she had suffered from PTSD after being attacked and raped in 2003. She did not want to disclose her name because she feared that she would lose her group health insurance if she went on the record as a rape victim. “I remember just feeling infuriated,” she said.
“I think it’s important to point out that health plans are not denying coverage based on the fact that someone was raped,” said Pisano of the insurance trade group. “But PTSD could be a factor in denied coverage.”
“That might not be a discriminatory action, but it certainly would seem to have a discriminatory impact,” said Sandra Park, staff attorney at the Women’s Rights Project at the American Civil Liberties Union. “Insurance discrimination against rape victims will only further discourage them from coming forward to law enforcement and seeking medical help.”
Even when patients have coverage, there are fundamental disagreements between insurance companies and doctors about what mental health treatment is medically necessary. The Investigative Fund spoke with doctors, psychologists, and licensed clinical social workers around the country who work regularly with victims of sexual assault. They said that their patients have been experiencing an increase in delays and denials, particularly for talk therapy.
“There’s a lot of anger about this in the medical community,” said Dr. George Shapiro-Weiss, a psychiatrist in Middletown, Conn. “You don’t realize what an Alice in Wonderland web this has become.”
“A lot of my patients are being told that their treatment isn’t medically necessary,” said Keri Nola, an Orlando, Fla., psychologist, who said about 75 percent of her patients are victims of sexual violence.
Several therapists cited problems with managed care companies that specialize in mental health. Such firms generally work under contract with health insurers to hold down costs while still authorizing appropriate care.
To watch a video about a rape victim’s efforts to obtain mental health services, click below.
Some therapists and patients said the managed care companies have cut off necessary treatment for sexual assault victims in the name of cost containment. “The companies are peppering them with questions about their symptoms, and about their histories, and asking, ‘Well, are you sure you really need therapy?’” said Jeffrey Axelbank, a New Jersey psychologist. “For someone who has been traumatized, it can feel like another trauma, and it makes the therapy less effective.”
Pisano, of the insurance association, said it was not fair to draw a larger pattern from such anecdotal evidence. “These situations are evaluated on a person-by-person basis,” she said. “There is nothing routine about this.”
Jim Wrich, a Madison, Wis., a consultant who helps employers evaluate the companies that manage their mental health care, said his work has made him wary of the industry. “This is absolutely routine - these denials,” Wrich said. “The default position is to reject care.”
Magellan Behavioral Health Services, Inc., one of the nation’s largest managed-care companies with more than 58 million customers, said that it does not routinely turn down treatment requests from victims of sexual assault or other clients. “We’re not denying care. We are exercising our responsibility to make sure that medical necessity is met,” said Dr. Lawrence Nardozzi, Magellan’s medical director. “I think the process works well.”
Asked if cost is a factor in the company’s decisions, Magellan spokeswoman Erin Somers said: “If all the safeguards are in place to determine whether treatment is medically necessary and appropriate” then “the cost takes care of itself.”
A former care manager for Magellan said in an interview that she felt pressure to deny care for cost reasons. Lois Gorwitz, a psychologist with thirty years of experience who went to work for Magellan in California in 2000, said her superiors would tell her: “We are not denying this person treatment, we are denying them their benefit. If they want the treatment they can still pay out of pocket.” But, Gorwitz said, “You know that means that the person is not going to get the treatment because they can’t afford to pay out of pocket.”
Gorwitz quit after two years. “It’s a very uncomfortable feeling of not being able to offer help,” she said.
Asked for a response, Magellan’s Somers said, “I think you should keep in mind that there have been a lot of changes at Magellan in the last seven years. I think the people who work at Magellan now are not having that experience.”
Video about this topic
Under Creative Commons License: Attribution No Derivatives
And this one hot off the press
Senate Approves Broader Hate-Crimes Bill
Senate Approves Broadened Hate-Crime Measure
By DAVID STOUT
WASHINGTON - The Senate voted Thursday to extend new federal protections to people who are victims of violent crime because of their sex or sexual orientation, bringing the measure close to reality after years of fierce debate.
The 68-to-29 vote sends the legislation to President Obama, who has said he supports it.
The measure, attached to an essential military-spending bill, broadens the definition of federal hate crimes to include those committed because of a victim’s gender or gender identity, or sexual orientation. It gives victims the same federal safeguards already afforded to people who are victims of violent crimes because of their race, color, religion or national origin.
“Hate crimes instill fear in those who have no connection to the victim other than a shared characteristic such as race or sexual orientation,” Senator Patrick J. Leahy, Democrat of Vermont and chairman of the Senate Judiciary Committee, said afterward. “For nearly 150 years, we have responded as a nation to deter and to punish violent denials of civil rights by enacting federal laws to protect the civil rights of all of our citizens.”
Mr. Leahy sponsored the hate-crimes amendment to the military bill and called its passage a worthy tribute to the late Senator Edward M. Kennedy of Massachusetts, who first introduced hate-crimes legislation in the Senate more than a decade ago.
Opponents argued to no avail that the new measure was unnecessary in view of existing laws and might interfere with local law enforcement agencies. Senator Jim DeMint, Republican of South Carolina, said he agreed that hate crimes were terrible. “That’s why they are already illegal,” Mr. DeMint said, asserting that the new law was a dangerous, even “Orwellian” step toward “thought crime.”
Ten Republicans voted for the hate-crimes measure. The only Democrat to oppose it was Senator Russ Feingold of Wisconsin, who said he could not vote for the current bill “because it does nothing to bring our open-ended and disproportionate military commitment in Afghanistan to an end and/or to ensure that our troops are safely and expeditiously redeployed from Iraq.” The Senate action came two weeks after the House approved the measure, 281 to 146, and would give the federal government the authority to prosecute violent, antigay crimes when local authorities failed to.
The measure would also allocate $5 million a year to the Justice Department to assist local communities in investigating hate crimes, and it would allow the agency to assist in investigations and prosecutions if local agencies requested help.
Federal protections for people who are victims of violent crime because of their sexual orientation have been sought for more than a decade, at least since the 1998 murder of Matthew Shepard, a gay Wyoming college student.
rushthatspeaks
Chronic Fatigue Syndrome caused by a human retrovirus?
October 21, 2009
Op-Ed Contributor
A Case of Chronic Denial
By HILLARY JOHNSON
EARLIER this month, a study published in the journal Science answered a question that medical scientists had been asking since 2006, when they learned of a novel virus found in prostate tumors called xenotropic murine leukemia virus-related virus, or XMRV: Was it a human infection?
XMRV is a gammaretrovirus, one of a family of viruses long-studied in animals but not known to infect people. In animals, these retroviruses can cause horrendous neurological problems, immune deficiency, lymphoma and leukemia. The new study provided overwhelming evidence that XMRV is a human gammaretrovirus - the third human retrovirus (after H.I.V. and human lymphotropic viruses, which cause leukemia and lymphoma). Infection is permanent and, yes, it can spread from person to person (though it is not yet known how the virus is transmitted).
That would have been news enough, but there was more. XMRV had been discovered in people suffering from chronic fatigue syndrome, a malady whose very existence has been a subject of debate for 25 years. For sufferers of this disease, the news has offered enormous hope. Being seriously ill for years, even decades, is nightmarish enough, but patients are also the targets of ridicule and hostility that stem from the perception that it is all in their heads. In the study, 67 percent of the 101 patients with the disease were found to have XMRV in their cells. If further study finds that XMRV actually causes their condition, it may open the door to useful treatments. At least, it will be time to jettison the stigmatizing name chronic fatigue syndrome.
The illness became famous after an outbreak in 1984 around Lake Tahoe, in Nevada. Several hundred patients developed flu-like symptoms like fever, sore throat and headaches that led to neurological problems, including severe memory loss and inability to understand conversation. Most of them were infected with several viruses at once, including cytomegalovirus, Epstein-Barr and human herpesvirus 6. Their doctors were stumped. The Centers for Disease Control and Prevention, the nation’s presumed bulwark against emerging infectious diseases, dismissed the epidemic and said the Tahoe doctors “had worked themselves into a frenzy.” The sufferers, a C.D.C. investigator told me at the time, were “not normal Americans.”
When, by 1987, the supposed hysteria failed to evaporate and indeed continued erupting in other parts the country, the health agency orchestrated a jocular referendum by mail among a handful of academics to come up with a name for it. The group settled on “chronic fatigue syndrome” - the use of “syndrome” rather than “disease” suggested a psychiatric rather than physical origin and would thus discourage public panic and prevent insurers from having to make “chronic disbursements,” as one of the academics joked.
An 11th-hour plea by a nascent patient organization to call the disease by the scientific name used in Britain, myalgic encephalomyelitis, was rejected by the C.D.C. as “overly complicated and too confusing for many nonmedical persons.”
Had the agency done nothing in response to this epidemic, patients would now be better off. The name functioned as a kind of social punishment. Patients were branded malingerers by families, friends, journalists and insurance companies, and were denied medical care. (It’s no coincidence that suicide is among the three leading causes of death among sufferers.) Soon the malady came to be widely considered a personality disorder or something that sufferers brought upon themselves. A recent study financed by the C.D.C. suggested that childhood trauma or sexual abuse, combined with a genetic inability to handle stress, is a key risk factor for chronic fatigue syndrome.
Many people don’t realize how severe this illness can be. It is marked by memory and cognition problems, and physical collapse after any mental or physical exertion. The various co-infections that occur only make matters worse. Many patients are bedridden. And recovery is rare. A significant number of patients have been ill for more than two decades.
Dr. Nancy Klimas, an immunologist at the University of Miami School of Medicine who treats AIDS and chronic fatigue syndrome, remarked in The Times last week that if given the choice she would prefer to have AIDS: “My H.I.V. patients for the most part are hale and hearty,” she said, noting that billions of dollars have been spent on AIDS research. “Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.”
Congress has appropriated money for research on chronic fatigue syndrome, too, though in far smaller amounts, but the C.D.C. has seemed unwilling to spend it productively. A decade ago, investigations by the inspector general for the Department of Health and Human Services and what was then called the General Accounting Office revealed that for years government scientists had been funneling millions meant for research on this disease into other pet projects.
As public health officials focused on psychiatric explanations, the virus apparently spread widely. In the new study, active XMRV infections were found in 3.7 percent of the healthy controls tested. Roughly the same degree of infection in healthy people has been found in the prostate research. If this is representative of the United States as a whole, then as many as 10 million Americans may carry the retrovirus.
It is estimated that more than a million Americans are seriously ill with the disease. (Not everyone infected with XMRV will necessarily get chronic fatigue syndrome - in the same way that not all of the 1.1 million Americans infected with H.I.V. will get AIDS.)
Hints that a retroviral infection might play a role in chronic fatigue syndrome have been present from the beginning. In 1991, Dr. Elaine DeFreitas, a virologist at the Wistar Institute in Philadelphia, found retroviral DNA in 80 percent of 30 chronic fatigue patients. The C.D.C. went so far as to try to replicate her effort, but refused to follow her exacting methods for finding the virus. In addition, the centers’ blood samples became contaminated, and some people at the agency said that administrators ended the research prematurely. Rather than admit any such failure, the C.D.C. publicly criticized Dr. DeFreitas’s findings.
That episode had a chilling effect on other researchers in the field, and the search for the cause was largely abandoned for 20 years.
Now, Judy Mikovits, the retrovirus expert at the Whittemore Peterson Institute, in Reno, Nev., who led the recent study, has revisited the cold case. Not surprisingly, the institute is private, created by the parents of a woman who suffers from chronic fatigue syndrome. But Dr. Mikovits collaborated with scientists at the National Cancer Institute and the Cleveland Clinic.
When she began her work on this disease in 2006, Dr. Mikovits, a 22-year veteran of the National Cancer Institute, knew little about chronic fatigue syndrome. But she was intrigued that an unusually high number of patients being followed by a Nevada doctor were suffering rare lymphomas and leukemias; at least one had died. And she was also impressed that the doctor, Dan Peterson, had built an extraordinary repository of more than 8,000 chronic fatigue syndrome tissue samples going back as far as 1984.
“My hypothesis was, ‘This is a retrovirus,’ and I was going to use that repository to find it,” Dr. Mikovits told me.
What she found was live, or replicating, XMRV in both frozen and fresh blood and plasma, as well as saliva. She has found the virus in samples going back to 1984 and in nearly all the patients who developed cancer. She expects the positivity rate will be close to 100 percent in the disease.
“It’s amazing to me that anyone could look at these patients and not see that this is an infectious disease that has ruined lives,” Dr. Mikovits said. She has also given the disease a properly scientific new name: X-associated neuroimmune disease.
For patients who have been abandoned to quackish theories and harsh ideologies about their illness for 25 years, the dismantling of “chronic fatigue syndrome” can’t come soon enough.
Hillary Johnson is the author of “Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic.”
(as rush says:) Utterly rage-inducing link of the day:" Having been raped as a pre-existing condition. If you take anti-HIV drugs after having been raped, you're probably uninsurable after that.
Rape Victim's Choice: Risk AIDS or Health Insurance?
By Danielle Ivory
Huffington Post Investigative Fund
Created 2009-10-21 13:38
Women Who Are Attacked Can Get Tangled in the Insurance System
Christina Turner feared that she might have been sexually assaulted after two men slipped her a knockout drug. She thought she was taking proper precautions when her doctor prescribed a month’s worth of anti-AIDS medicine.
Only later did she learn that she had made herself all but uninsurable.
Turner had let the men buy her drinks at a bar in Fort Lauderdale. The next thing she knew, she said, she was lying on a roadside with cuts and bruises that indicated she had been raped. She never developed an HIV infection. But months later, when she lost her health insurance and sought new coverage, she ran into a problem.
Turner, 45, who used to be a health insurance underwriter herself, said the insurance companies examined her health records. Even after she explained the assault, the insurers would not sell her a policy because the HIV medication raised too many health questions. They told her they might reconsider in three or more years if she could prove that she was still AIDS-free.
Stories of how victims of sexual assault can get tangled in the health insurance system have been one result of the Huffington Post Investigative Fund’s citizen journalism project [1], which is calling on readers to provide information and anecdotes about the inner workings of the insurance industry. The project aims to uncover details and data that can inform the larger debate over how to fix the nation’s health care system. As the Investigative Fund reported in September [2], health insurance companies are not required to make public their records on how often claims are denied and for what reasons.
Some women have contacted the Investigative Fund to say they were deemed ineligible for health insurance because they had a pre-existing condition as a result of a rape, such as post traumatic stress disorder or a sexually transmitted disease. Other patients and therapists wrote in with allegations that insurers are routinely denying long-term mental health care to women who have been sexually assaulted.
Susan Pisano, spokeswoman for the health insurance industry’s largest trade group, America’s Health Insurance Plans, said insurers do not discriminate against victims of sexual assault and ordinarily would not even know if a patient had been raped.
"These issues you are bringing up, they deserve to be brought up,” said Pisano. "People who have experienced rape and sexual assault are victims and we want them to be in a system where everyone is covered."
Turner’s story about HIV drugs is not unusual, said Cindy Holtzman, an insurance agent and expert in medical billing at Medical Refund Service, Inc. of Marietta, Ga. Insurers generally categorize HIV-positive people as having a pre-existing condition and deny them coverage. Holtzman said that health insurance companies also consistently decline coverage for anyone who has taken anti-HIV drugs, even if they test negative for the virus. “It’s basically an automatic no,” she said.
Pisano, of the insurance trade group, said: “If you put down on a form that you are or were taking anti-HIV drugs at any time, they [the insurance companies] are going to understand that you are or were in treatment for HIV, period. That could be a factor in determining whether you get coverage."
Some doctors and nurses said that the industry’s policy is not medically sound. “The chance of a rape victim actually contracting AIDS is very low. It doesn’t make any sense to use that as a calculus for determining who get health insurance,” said Dr. Alex Schafir, faculty instructor at Providence St. Vincent Hospital in Portland, Ore.
Nurses who deal with sexual assault cases say the industry’s policy creates a significant problem for those treating women who have been assaulted. “It’s difficult enough to make sure that rape victims take the drugs,” said Diana Faugno, a forensic nurse in California and board director of End Violence Against Women International. “What are we supposed to tell women now? Well, I guess you have a choice - you can risk your health insurance or you can risk AIDS. Go ahead and choose.”
Turner, now a life and casualty insurance agent, said she went without health coverage for three years after the attack. She second-guesses her decision to take the HIV drugs. “I’m going to be penalized my whole life because of this,” she said.
Several women told the Investigative Fund that after being sexually assaulted they had been denied care or ruled ineligible for health insurance because of what were deemed pre-existing conditions stemming from their assaults -- particularly post traumatic stress disorder, or PTSD.
A 38-year-old woman in Ithaca, N.Y., said she was raped last year and then penalized by insurers because in giving her medical history she mentioned an assault she suffered in college 17 years earlier. The woman, Kimberly Fallon, told a nurse about the previous attack and months later, her doctor’s office sent her a bill for treatment. She said she was informed by a nurse and, later, the hospital’s billing department that her health insurance company, Blue Cross Blue Shield, not only had declined payment for the rape exam, but also would not pay for therapy or medication for trauma because she “had been raped before.”
Fallon says she now has trouble getting coverage for gynecological exams. To avoid the hassle of fighting with her insurance company, she goes to Planned Parenthood instead and pays out of pocket.
A New Mexico woman told the Investigative Fund she was denied coverage at several health insurance companies because she had suffered from PTSD after being attacked and raped in 2003. She did not want to disclose her name because she feared that she would lose her group health insurance if she went on the record as a rape victim. “I remember just feeling infuriated,” she said.
“I think it’s important to point out that health plans are not denying coverage based on the fact that someone was raped,” said Pisano of the insurance trade group. “But PTSD could be a factor in denied coverage.”
“That might not be a discriminatory action, but it certainly would seem to have a discriminatory impact,” said Sandra Park, staff attorney at the Women’s Rights Project at the American Civil Liberties Union. “Insurance discrimination against rape victims will only further discourage them from coming forward to law enforcement and seeking medical help.”
Even when patients have coverage, there are fundamental disagreements between insurance companies and doctors about what mental health treatment is medically necessary. The Investigative Fund spoke with doctors, psychologists, and licensed clinical social workers around the country who work regularly with victims of sexual assault. They said that their patients have been experiencing an increase in delays and denials, particularly for talk therapy.
“There’s a lot of anger about this in the medical community,” said Dr. George Shapiro-Weiss, a psychiatrist in Middletown, Conn. “You don’t realize what an Alice in Wonderland web this has become.”
“A lot of my patients are being told that their treatment isn’t medically necessary,” said Keri Nola, an Orlando, Fla., psychologist, who said about 75 percent of her patients are victims of sexual violence.
Several therapists cited problems with managed care companies that specialize in mental health. Such firms generally work under contract with health insurers to hold down costs while still authorizing appropriate care.
To watch a video about a rape victim’s efforts to obtain mental health services, click below.
Some therapists and patients said the managed care companies have cut off necessary treatment for sexual assault victims in the name of cost containment. “The companies are peppering them with questions about their symptoms, and about their histories, and asking, ‘Well, are you sure you really need therapy?’” said Jeffrey Axelbank, a New Jersey psychologist. “For someone who has been traumatized, it can feel like another trauma, and it makes the therapy less effective.”
Pisano, of the insurance association, said it was not fair to draw a larger pattern from such anecdotal evidence. “These situations are evaluated on a person-by-person basis,” she said. “There is nothing routine about this.”
Jim Wrich, a Madison, Wis., a consultant who helps employers evaluate the companies that manage their mental health care, said his work has made him wary of the industry. “This is absolutely routine - these denials,” Wrich said. “The default position is to reject care.”
Magellan Behavioral Health Services, Inc., one of the nation’s largest managed-care companies with more than 58 million customers, said that it does not routinely turn down treatment requests from victims of sexual assault or other clients. “We’re not denying care. We are exercising our responsibility to make sure that medical necessity is met,” said Dr. Lawrence Nardozzi, Magellan’s medical director. “I think the process works well.”
Asked if cost is a factor in the company’s decisions, Magellan spokeswoman Erin Somers said: “If all the safeguards are in place to determine whether treatment is medically necessary and appropriate” then “the cost takes care of itself.”
A former care manager for Magellan said in an interview that she felt pressure to deny care for cost reasons. Lois Gorwitz, a psychologist with thirty years of experience who went to work for Magellan in California in 2000, said her superiors would tell her: “We are not denying this person treatment, we are denying them their benefit. If they want the treatment they can still pay out of pocket.” But, Gorwitz said, “You know that means that the person is not going to get the treatment because they can’t afford to pay out of pocket.”
Gorwitz quit after two years. “It’s a very uncomfortable feeling of not being able to offer help,” she said.
Asked for a response, Magellan’s Somers said, “I think you should keep in mind that there have been a lot of changes at Magellan in the last seven years. I think the people who work at Magellan now are not having that experience.”
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And this one hot off the press
Senate Approves Broader Hate-Crimes Bill
Senate Approves Broadened Hate-Crime Measure
By DAVID STOUT
WASHINGTON - The Senate voted Thursday to extend new federal protections to people who are victims of violent crime because of their sex or sexual orientation, bringing the measure close to reality after years of fierce debate.
The 68-to-29 vote sends the legislation to President Obama, who has said he supports it.
The measure, attached to an essential military-spending bill, broadens the definition of federal hate crimes to include those committed because of a victim’s gender or gender identity, or sexual orientation. It gives victims the same federal safeguards already afforded to people who are victims of violent crimes because of their race, color, religion or national origin.
“Hate crimes instill fear in those who have no connection to the victim other than a shared characteristic such as race or sexual orientation,” Senator Patrick J. Leahy, Democrat of Vermont and chairman of the Senate Judiciary Committee, said afterward. “For nearly 150 years, we have responded as a nation to deter and to punish violent denials of civil rights by enacting federal laws to protect the civil rights of all of our citizens.”
Mr. Leahy sponsored the hate-crimes amendment to the military bill and called its passage a worthy tribute to the late Senator Edward M. Kennedy of Massachusetts, who first introduced hate-crimes legislation in the Senate more than a decade ago.
Opponents argued to no avail that the new measure was unnecessary in view of existing laws and might interfere with local law enforcement agencies. Senator Jim DeMint, Republican of South Carolina, said he agreed that hate crimes were terrible. “That’s why they are already illegal,” Mr. DeMint said, asserting that the new law was a dangerous, even “Orwellian” step toward “thought crime.”
Ten Republicans voted for the hate-crimes measure. The only Democrat to oppose it was Senator Russ Feingold of Wisconsin, who said he could not vote for the current bill “because it does nothing to bring our open-ended and disproportionate military commitment in Afghanistan to an end and/or to ensure that our troops are safely and expeditiously redeployed from Iraq.” The Senate action came two weeks after the House approved the measure, 281 to 146, and would give the federal government the authority to prosecute violent, antigay crimes when local authorities failed to.
The measure would also allocate $5 million a year to the Justice Department to assist local communities in investigating hate crimes, and it would allow the agency to assist in investigations and prosecutions if local agencies requested help.
Federal protections for people who are victims of violent crime because of their sexual orientation have been sought for more than a decade, at least since the 1998 murder of Matthew Shepard, a gay Wyoming college student.