Action Alert! Make your voice heard in Washington DC!!!!

We have until December 26 at 5 pm (EST) to do so!

Support EDC’s efforts to strengthen the affordable care act!

The design of the Essential Health Benefits (EHB) is an important opportunity to address the health needs of more than 14 million Americans suffering from eating disorders. With the passage of the Affordable Care Act there was the inclusion of mental health as a specific benefit that must be covered. The EDC is working hard to make sure eating disorders are incorporated into the EHB. This is an opportunity to lessen the continued and widespread insurance discrimination experienced by people with eating disorders.

We need your voice!

The EDC asks you to support our extensive comments by sending in your comments as well.

Here is how:

1. go to: http://www.regulations.gov/#!submitComment;D=CMS-2012-0142-0001
2. Click "Comment Now" button

3. Enter your name and other information

4. Cut and paste below (limited to 2000 characters)
5. Click Submit

Comments: (Note: These are so short and concise due to the 2000 character limitation)

Please incorporate the following recommendations so that people with eating disorders will have better access to treatment.

1. Benefit substitutions should not be a vehicle to exclude or limit needed care for eating disorders.

The proposed rule allows plans substantial flexibility to substitute benefits within the EHB categories. This approach could undermine coverage for enrollees with eating disorders if a plan is able to use its substitution flexibility to exclude eating disorders treatment or eliminate medically necessary components of the continuum of care for these conditions. All States should have robust and detailed EHB packages that ensure full coverage of all medically necessary services across the continuum of care in each of the categories, including the mental health category.

2. Ensure that health insurance plans do not discriminate on the basis of sex in the implementation of the essential health benefits.

According to Section 1557, limits on covered services and condition-based exclusions that disproportionately affect women can be discriminatory. Plans that cover treatment for mental health conditions, but exclude it for eating disorders, including residential care, discriminates against women given that three times as many women as men suffer from these conditions. The Secretary must address this sex discrimination and ensure eating disorders treatment is included in the EHB package.

3. Make out-of-network more affordable

Requirements related to cost-sharing in the proposed rule may expose individuals to high out-of-pocket costs. Since there are not many providers with eating disorders expertise many individuals with eating disorders require access to medical providers and eating disorder specialists, who are not within the plan’s specified network. The Department should create a special rule to ensure out-of-network providers are a viable option for patients that are unable to get the care they need through in-network providers.

Dear EDC Advocate

I come to my computer with a broken heart. This morning I was sitting in a coffee shop working on efforts promoting the inclusion of eating disorders treatment in health insurance policies – when I joined a conversation with two mothers who were also pastors. Together we cried with the piercing loss of so many beautiful and precious children and adults. These children are our children. Their loss is our loss. We grieve with the parents and families. We weep with the community of Newtown. Today we weep. That is an appropriate and necessary response.

Tomorrow we act! Tomorrow we continue to organize, rally, and advocate. We will change laws, promote policies and work to make sure people with mental illness are respected and given the care, support and treatment they need and deserve.

We owe our action to the innocent children and adults of Newtown. Taking care of one another is not a sign of weakness or indulgence it is a sign of compassion and social responsibility. The people of Newtown deserve our action to find and implement solutions to the social and health dilemmas of our time. The EDC is committed to being part of this solution! We will be on a conference call this week with the broader mental and behavioral health community in Washington DC to find solutions to respond to this tragedy.

Jeanine Cogan, Ph.D
Policy Director
Eating Disorders Coalition

When there is a will there is eventually a way.

Congresswoman Eshoo's success in passing a cancer bill is the future the EDC envisions for eating disorders legislation.  The EDC was responsible for getting key language to expand research on eating disorders at NIH earlier this year.  We will be seeking additional opportunities in 2013 to move provisions and goals of the FREED Act forward.  We look forward to your participation at our two lobby days, one on April 18th and one September 26th!  Stay tuned. 

Read more about Congresswoman Eshoo's success

Parity for Behavioral Health Coverage Delayed by Lack of Federal Rules

By MICHAEL OLLOVE, STATELINE

DEC 02, 2012

This story comes from our partner Stateline, the daily news service of the Pew Center on the States.

Danielle Moles is anorexic, which in her case played out not only in a near-starvation diet but also in obsessive running. She ran during tornados. She ran in temperatures that fell to 20 degrees below zero and froze her ponytail solid. She ran a marathon with a stress fracture in her foot. She ran when she was supposed to be at birthday parties and bridal showers and family vacations. She ran until she literally passed out.

Even with all that exercise, Moles convinced herself it wasn’t enough. She denied herself liquids to punish herself. She purged. She abused laxatives so frequently that she permanently damaged her digestive system and wore the enamel off her teeth. Her body rebelled in other ways as well: She stopped menstruating. She was persistently light-headed and nauseated. She began having seizures. One particularly awful night in 2008, she tried to end it all with a half-bottle of Ativan.

There were more consequences to her destructive behavior. She miscarried. Her marriage fell apart. Her career as a nurse foundered.

Doctors diagnosed Moles, now 32, with anorexia and depression, and prescribed long-term care in a residential psychiatric facility. But Moles’ insurers said she wasn’t covered for such care. About a year ago, her insurer finally agreed to pay for three months in an Illinois residential psychiatric facility. Those three months proved more effective than anything she had tried previously. Eight months after Moles left the facility, her weight had stabilized at 120 pounds—only five pounds less than her doctors recommend—and she hasn’t run in a year.

Moles doesn’t understand why her insurance company resisted paying for the residential care she needed, especially because it would have covered lengthy in-patient care to recover from a stroke or heart attack. “I don’t understand why mental health isn’t as recognized as much as a physical condition,” she says. “This is just as debilitating.”

A Law but No Rules

Congress recognized that equivalence in 2008 when it passed the Mental Health Parity and Addiction Act, which requires insurers to cover mental illness and substance abuse treatment on an equal basis with physical ailments. The law, which passed with substantial bipartisan support, was supposed to eliminate two-tiered systems for co-pays, deductibles or treatment limitations.

The Obama administration's Affordable Care Act will vastly extend the reach of the 2008 law. The older law does not require health insurance plans to offer behavioral health coverage, although if they do it must be on par with benefits provided for medical and surgical care. But the ACA does require that all health plans sold on the soon-to-be-created state health insurance exchanges eventually offer mental health coverage. Those plans, then, will all be required to observe the federal parity act.

The problem, behavioral health advocates say, is that more than four years after President George W. Bush signed the parity bill into law, the Obama administration has yet to complete the federal rules that would enable states to enforce it.

As a result, behavioral health may actually have fallen further behind since passage of the law. In May, the U.S. Government Accountability Office released a report showing that health insurance plans have actually increased the number of exclusions for mental health and addiction treatments since the law was enacted. In 2010 and 2011, for example, 15 percent of the plans surveyed by the GAO were excluding residential mental health, a significant increase from 2008.

"Hundreds of thousands of Americans are being denied their rights under the federal parity law," says James Ramstad, a former Republican congressman who originally introduced the House version of the bill in 1996 at the request of his friend and fellow Minnesotan, the late Democratic Senator Paul Wellstone, whose name is memorialized on the law. Wellstone was killed in a plane crash in 2002. "It took 12 years to pass that parity act and four years later, we still have no rules and therefore no enforcement," says Ramstad. "It’s unconscionable."

Ramstad and another former congressman, Patrick Kennedy, whose father, Sen. Edward Kennedy, also championed the law after Wellstone’s death, have been convening meetings across the country in which experts and patients -- some of them of them soldiers returning from war in Iraq or Afghanistan -- testify in support of the law. The motive of the meetings, Kennedy says, is to publicize the parity law and prod the Obama Administration to act.

"Right now, there are no regulations telling the insurance companies how to comply," says Kennedy. "A law without rules isn’t worth the paper it’s written on, and what that means is that insurance companies can continue to do business as usual."

Victoria Veltri, Connecticut’s Health Advocate, agrees. She says pushing insurers to observe parity is difficult without the specific requirements federal rules would spell out. "It makes it very difficult to make arguments about whether the criteria the insurers are using pass muster or not."

The U.S. Department of Health and Human Services had not responded to multiple requests for comment at the time this article was published.

Some Progress

Some states, including Connecticut, Maryland, Maine, Oregon, and Vermont, have enacted strong laws to beef up coverage of behavioral health, but those statutes do not cover all health insurance plans, including those issued by the many large employers which insure their own workers.

States that refuse to enforce the parity act after HHS releases the rules likely will face lawsuits from patients, as well as pressure from the Obama administration, which has the authority to enforce the law if the states do not.

Even without the final rules, the broad outlines of what parity will look like are relatively clear: Insurance companies will not be permitted to impose more restrictive spending limits on mental health or addiction benefits than they impose on medical and surgical benefits. They will not be able to limit the frequency or duration of mental health treatment more severely than they do for other forms of care, nor will they be allowed separate deductibles or more restrictive authorization rules.

Andrew Sperling of the National Alliance on Mental Illness says that even without final federal rules, insurance companies generally have eliminated separate deductibles and scrapped unequal spending limits. But Sperling and other advocates say insurers continue to disallow mental health and addiction treatments in non-hospital based facilities, and also to exclude types and levels of treatment for behavioral patients, while covering a full range of treatments for medical patients. They also say that behavioral health patients are often subject to reviews and criteria that are not required of patients on the medical and surgical side.

Fail First

Substance abuse treatment advocates are particularly troubled by the requirement that people with addictions fail at lower levels of care before they are approved for more intensive treatments. They say the "fail first" requirement would never be tolerated for medical and surgical patients.

"It’s a classic example of discrimination and a moral overtone that is a remnant of the past that still lingers," says Beth Middlebrook, legal coordinator of Watershed Addiction Treatment Programs. "It comes from the belief that the alcoholic is a bad person as opposed to a person with a bad disease."

Susan McClanahan, Danielle Moles' psychologist, is convinced that Danielle has paid a heavy price because of the unequal treatment accorded behavioral health patients.

"If she had been able to have a residential stay earlier," says McClanahan, "the course of her illness would not have been so long."

There might have been other benefits as well. Had Moles gotten the help she needed at the beginning, her treatment might have cost her insurers roughly $80,000 instead of the $500,000 to $750,000 she estimates they eventually shelled out. (Moles estimates she has paid $150,000 out of her own pocket.) She also might have avoided the physical ailments she has today that resulted from her mental illness, including seizures and chronic pain in her back and knees.

"I’m terrified that I won’t have the life of normalcy I long for," she says. "I want to have a relationship again. I want to have children. I want a profession and career that I love."

She can't help wondering whether she’d already be living that life it if she had gotten the help she needed when she needed it.

Advocates Push for More Research Into Eating Disorders

CQ HEALTHBEAT NEWS
Nov. 29, 2012 – 4:17 p.m.
By Jane Norman, CQ HealthBeat Associate Editor

Medical experts, parents and researchers Thursday called for more federal attention to research, education and treatment for eating disorders, a mental illness that can lead to medical complications and even death.

In a briefing at the Capitol, members of the Eating Disorders Coalition and F.E.A.S.T., another advocacy group, said that such chronic illnesses as anorexia, bulimia and binge eating are widely misunderstood and too often blamed on parents or the patients themselves. “These are very, very serious, very dangerous disorders,” said Mark Chavez, chief of the eating disorders program at the National Institute of Mental Health.

The disorders — like many mental illnesses — also carry a stigma, advocates said. “We have been ashamed and we have stood back,” said Laura Collins, executive director of F.E.A.S.T. “We know patients do not choose to be ill. Families do not cause eating disorders and I am sorry I even have to say that.”

Advocates said that at least 11 million Americans have an eating disorder and it’s the third most common chronic illness among adolescents. The disorders, characterized by eating very small amounts of food or very large amounts, often are thought to be genetic in origin. “Severe distress or concern about body weight or shape may also characterize an eating disorder,” says NIMH material on the illness.

According to NIMH, the disorders frequently appear during childhood or the teens. And Chavez said patients with the disorders tend to have both psychiatric and medical conditions. Depression and anxiety may co-exist with cardiac problems, brain damage and osteoporosis, all particularly dangerous in growing children and teens. And insurance coverage for treatment is often skimpy or non-existent, parents said.

One problem is that there’s no clear answer as to how or why disorders are triggered, said Julie O’Toole, a physician who runs a treatment clinic. That makes prevention difficult. “We need to focus like a laser on early recognition,” said O’Toole.

Parent Amy Snyder talked about her 7-year-old daughter, who told her mother she heard a “mean voice” in her head that instructed her to not eat, which is common among patients. “Essentially the child is afraid to eat. They’re afraid of food,” said Snyder, who found effective treatment following an initial misdiagnosis by a pediatrician of her daughter’s symptoms of dizziness, itchy skin and constipation.

The briefing for congressional staff was sponsored by Senate Health, Education, Labor and Pensions Committee Chairman Tom Harkin, D-Iowa, who has sponsored legislation (S 481) on eating disorders that has not yet been taken up by the panel. He is expected to re-introduced it next year. A companion bill (HR 1448) has been introduced in the House by Rep. Tammy Baldwin, D-Wis., who was elected to the Senate earlier this month.

Under the measures, federal research would be funded that would determine the prevalence of all eating disorders as well as the mortality rates and the associated health care costs. There would also be a study of mandatory BMI reporting in schools, a grant program for training and educating professionals and public service announcements on eating disorders.

The House bill would require that any health insurer that provides health coverage for physical illnesses must provide coverage for eating disorders, and that insurers are required to follow standards of care for patients with eating disorders as laid out by the American Psychiatric Association. Both the House and Senate bills would require eating disorder treatments be covered by Medicaid, and that children enrolled in Medicaid be screened for eating disorders.

Advocates acknowledged it’s an uphill fight to find new funding in a tough budget environment but said they will persist. “This is a pretty young bill,” said Jeanine Cogan, policy director of the Eating Disorders Coalition, noting it was first introduced in the House in 2009 and in the Senate in 2010.

Jane Norman can be reached at jnorman@cq.com.

EDC Blog named one of the best Eating Disorder Blogs of 2012!

We are thrilled to be included among the best 18 Eating Disorder Blogs of 2012 from healthline.com

Click here to read more

Action Alert: Parity Sign On Letter

Dear EDC Advocate:

As we approach the fourth anniversary of the enactment of the Mental Health Parity and Addiction Equity Act (MHPAEA) on October 3, 2008, we are asking for your help to make the purpose of the federal parity law a reality.

Although MHPAEA was enacted nearly four years ago, a final rule implementing the law has not yet been issued. Without a final rule from the Administration, many individuals seeking care for eating disorders, mental health and addictive disorders have been unable to access the health care services they need.

Please ask your Member of Congress to sign the letter to the Administration asking them to issue a final parity rule and provide an update on progress made thus far in implementing the law. The EDC is working in collaboration with the mental health community on this effort. Go to the following link offered by one of our collaborators Faces and Voices of Recovery to act now!

http://org2.democracyinaction.org/o/7158/p/dia/action/public/?action_KEY=11753

Members of Congress should contact Melissa Gierach with Rep. Sullivan (R-OK) or Anne Sokolov with Rep. Ryan (D-OH) to sign on to the letter.

The deadline for Members of Congress to sign on is October 5.

Members of Congress who have signed on thus far include:
• Tonko (D-NY)
• Kaptur (D-OH)
• Bono Mack (R-CA)
• Moran (D-VA)
• Brown (D-FL)
• Quigley (D-IL)
• Lewis (D-GA)
• Holden (D-PA)
• McGovern (D-MA)

Thank you for adding your voice to this effort of making parity a reality!