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...from all of us at Advocacy for Patients -- Jennifer, Nicole, Echo, and our Board, Carol, Janis, Clay, Pasquale, Laura and Tom! |
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| Know Your Rights Handbook |  |
Want to be your own advocate? Learn how by ordering the Know Your Rights Handbook today. Learn about health and disability insurance, Social Security disability, employment discrimination, family and medical leave, school-based accommodations, resource location, and much more.
Click here for more information.
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Look What I Just Found!
The Invisible Disabilities Association. I may already have told you about this one, but it's worth repeating. Heck, I'd have started this organization if I'd thought of it first. What a great website, great organization. Tell your stories. Read others'. Be invisible no more! Check it out.
And we have a new friend and partner, Fair Health, which is a nonprofit dedicated to transparency in health care pricing. Want to know what things ought to cost? Check out their consumer website here. You can see what you as a consumer should be charged -- and lots of additional info that I think you'll find helpful. This is one to bookmark, for sure.
Jennifer
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NEW!!!
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Read the results of our chronic illness survey, available FREE here.
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What I'm Reading
I'm re-reading Ambiguous Loss by Pauline Boss. It's about losses that you can't resolve, as to which there is no finality. Like the loss you feel from having a chronic illness. It's loss, alright -- loss of physical abilities, loss of someone who doesn't understand, loss of being "normal" (whatever that is) -- but it's not like a death that you can grieve and put behind you. This book really helped me put it in perspective. When you accept the loss rather than trying to put it behind you, and incorporate it into your life in positive ways, it's there, but you learn to live with it.
Hard to explain, but not a tough read. Just an important one.
Jennifer
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Get Your Guts In Gear
The 2011 rides are over, sadly. By all accounts, they were an amazing experience for all involved. Stay tuned for information on the 2012 rides. In the meantime, to learn more about Get Your Guts in Gear, see their website for details or call 866-9IGOTGUTS (866-944-6848).
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Advocacy for Patients on the Move!
We hibernate in the winter if we can, but we're starting to book for the spring. Want us to come speak to your group? Now's the time to line it up. Can we do a webinar for your organization? Contact Jennifer and we'll be happy to accommodate your request.!
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It's Too Hard to Be Sick in America
Our book, It's Too Hard to Be Sick In America, is available FREE for your reading pleasure on our website. In it, we tell the stories of some of the patients with whom we've worked in order to show policymakers what chronic illness really looks like. Go have a read -- and the next time you talk to someone who clearly doesn't "get it," give them a copy of It's Too Hard to be Sick in America.
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Advocacy for Patients with Chronic Illness
We provide FREE information, advice and advocacy services to patients with chronic illnesses in areas including health and disability insurance, Social Security disability, employment discrimination, Family & Medical Leave Act, school-based discrimination, and resource location.
Need help? Call (860) 674-1370 or email us.
Advocacy for Patients Needs Your Help!
To keep providing these services for FREE, we need your help.
WE DO NOT SOLICIT DONATIONS OUTSIDE OF THE FOLLOWING STATES: CT, MA, WA, MN, CA, IL, NY, TX, VT, MT, ID, WY, NV, SD, NE, IA, IN. Advocacy for Patients is committed to using its funds to support the work we do on behalf of patients. Accordingly, due to the cost of registering to solicit donations in other states, we do not solicit donations outside of the states listed above. Nevertheless, generous donors from many states make unsolicited donations for which we are very grateful.
THANK YOU!
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Advocacy for Patients Reports to Federal Government on Failure of External Appeals from Decisions of Self-funded Plans
On November 21, 2011, Advocacy for Patients sent a letter to the Department of Labor, with copies to other agencies, the White House, and members of Congress regarding a pattern of problems we have been seeing when a self-funded plan is allowed to select its own "independent" reviewer.
As you may recall, a self-funded plan is one in which the employer hires a third party administrator (TPA) to run the plan, but the employer actually pays for the health care services that are approved by the TPA. External appeals are appeal to an independent party with no financial stake in the decision of the plan. In response to an outcry from the plans about the burdensomeness of contracting with at least 3 Independent Review Organizations (IROs), the Department of Labor allowed self-funded plans a grace period during which they only have to have one IRO reviewing their decisions. We told them this wouldn't work, and here's the proof.
In a letter dated November 21, 2011, Advocacy for Patients told them about three cases:
Case number one involved a denial of coverage of sacral nerve stimulation for fecal incontinence. The plan (Employer: Kodak; TPA: MVP Health Plan) denied coverage on the ground that this allegedly is experimental investigational. The chosen IRO, MCMC, (1) did not send me a copy of their decision, but only sent it to the provider, and when I asked about this, they said they never send their decisions to anybody other than the member and the provider, even when the member is represented by counsel; (2) did not state the reviewer's credentials; and (3) did not list the materials they reviewed in conducting their review. The reviewer agreed with us that the service is not experimental/investigational. However, he made up an entirely new standard, claiming that the patient's fecal incontinence was not severe enough to warrant this treatment. Where this severity requirement comes from is anybody's guess. It certainly is not in the plan's coverage policy or in the FDA approval letter, or in any of the published medical literature. We could not help but feel that the reviewer was straining to do whatever needed to be done to find a reason to deny coverage. Case number two involved a denial of IVIg for the treatment of a patient with normal IgG levels, but who has severe polysaccharide nonresponsiveness and recurrent infections. The plan (Employer: University of Chicago; TPA Blue Cross Blue Shield of Illinois) denied coverage on the ground that the patient did not meet the criteria for polysaccharide nonresponsiveness or recurrent infection. The plan relied on blood tests for a date certain; there were no blood tests for that date. There were at least fifty office notes documenting respiratory and sinus infections that were difficult to treat, always treated with antibiotics. At no time did the plan state why this documentation of recurrent infections was insufficient. There also were several procedural irregularities. For example, no appeal instructions were provided with the denial. In addition, although the plan sent me a letter stating that we would have an opportunity for a hearing on the second level internal appeal, I called and called to schedule this hearing, then finally faxed a letter, to no avail - we never got our hearing. But most egregious of all, we filed our request for external appeal in July 2011. It was not until I started calling and calling that BCBS of IL finally told us in September that they did not see our appointment of representative form, so the appeal was just ignored. When I sent them the appointment of representative form again, they then said that they had logged our previous appeals in as provider appeals rather than member appeals, and so we had to exhaust the member's internal appeals before we were entitled to external review. Once I convinced them that the way they characterized the appeals was not an excuse to require us to file another two levels of internal appeal, they mistakenly sent the appeal to the state for assignment of an IRO. After an IRO was assigned, they realized their mistake, recalled the file from the state, and said they would assign their own IRO. They finally assigned the IRO, MCMC, in October - three months after we had filed the request for external review. MCMC denied coverage. Again, they did not send me the decision; they sent it to my client only. Again, they did not provide the reviewer's qualifications. Again, they did not list the materials they reviewed. Although we had included a discussion of the procedural irregularities, MCMC did not comment on them at all. As regards polysaccharide nonresponsiveness, they essentially said that the treating physician's interpretation of the blood test results was just wrong. They did not explain why. They did not cite authority. They just said that the pneumococcal antibody titers were protective, whereas the treating physician says they were not. Then they said that, although BCBS of IL's policy requires only that we show that the titers were not increased at least four-fold after vaccination, the reviewer thought that wasn't a strict enough standard! As regards evidence of infections, the reviewer said we could not show recurrent upper respiratory or sinus infections without rhinoscopy, CT scan, and/or sputum cultures. The patient has had countless infections; not only did the plan never state in its coverage policy or denial letter that this type of proof is required, but it seems strange that the plan would want to pay for expensive tests every time a patient has sinusitis, nor does it make good medical sense to have the patient go through invasive procedures when every one of the three physicians treating this patient have diagnosed her infections consistently and repeatedly. Again, we cannot help but feel that this is a reviewer who is straining to find a way to rule for the plan. Finally, in the third case, in which I merely assisted the consumer, the same IRO, MCMC, assigned a physiatrist with a specialty in pain management to a case in which a neuromuscular geneticist recommended physical therapy. The case had nothing to do with pain control. There is no question that this was the wrong type of specialist to assign to the case; however, MCMC and the TPA (Aetna) have rejected the consumer's request that the file be re-reviewed by a physician with the appropriate expertise. Further, the consumer only learned of the result of this expedited appeal by taking the initiative to call a week later; he was not notified of MCMC's decision. Since MCMC is one of the largest IROs, we have had many external appeals involving fully-funded plans submitted to them over the years. Although I was not always happy with the result, MCMC was professional, it followed the rules, and it was thorough. That most definitely is not the case with respect to the external reviews they are conducting on behalf of self-funded plans.
In our view, this is compelling evidence that the rule allowing self-funded plans to select their own IROs undermines the integrity of the external appeal process. There is no independence; in my two cases, the MCMC reviewer played the role of advocate for the plan, not independent reviewer. Indeed, in both cases, they applied medical standards stricter than those set forth in the TPAs' clinical policy bulletins, which they had to do if the plans were to win.
Will this letter matter? We copied our letter to several officials including people at the White House, Department of Health and Human Services, and Congress. We've also sent it to a couple of reporters. We hope that, by being public about these cases, we may do some good for a large number of people. We may or may not receive any responses, but hopefully, we've at least made people stop and think. If you feel we've missed anybody, feel free to download the letter and send it to anybody you think we've missed. Thanks. Jennifer |
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'Tis the Season of Giving
2011 has been a remarkable year for Advocacy for Patients. We hired a second lawyer and, after realizing that this put my house over the level of occupancy that I could handle, we moved into commercial offices. That means our expenses this year greatly exceeded our budget, and next year's budget is a lot bigger than this year's.
You can help. If each of you gave $10, we'd break even on the year. If you gave a bit more, you would help us move forward into next year.
We understand that these are hard times for everyone. So if we've helped you in any way this year, if you can't afford to help us, perhaps you can ask friends or family to do so in your honor.
And for those of you whom we did help this year -- or who may care that we're around next year to help -- who can afford to give but simply didn't, please, please don't let the year end without making a donation. Are you one of the groups that refers to us a lot? Are you a doctor or nurse who indirectly benefited when we won an insurance appeal for one of your patients? Did we help your child get through the school year? Did we help you get severance when you lost your job?
If you care about Advocacy for Patients' continued existence, please go to the donate button at the lower left column of this newsletter and give what you can. Or mail us a check at 195 Farmington Ave., Suite 306, Farmington, CT 06032.
And if you can't give, and you don't know anybody who can give on your behalf, that's okay. We will fight to the end to make sure we have the funding to keep providing you the help you need as best we can.
But if you can give, now would be a really good time. Thanks!
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Nicole's Corner: Vocational Rehabilitation Our wonderful staff attorney, Nicole Netkin-Collins, has been here for several months now, and she would like to get to know you better. She interned at Advocacy for Patients the summer after her first year of law school and returned on several occasions throughout the remainder of her law school career. After graduating and passing the bar, she finally returned as a full-fledged staff attorney in March 2011. She's learning more each day - including the incredible obstacles that so many of you have overcome to succeed in school, at work, against your insurance companies, and more. Like me, she's been moved to tears, to anger, and sometimes, even to happiness by what she's learned in the short amount of time that she's been here. She's asked for a place in this newsletter where she can share some of her thoughts - or, notes rather - with you each month. So here's our new regular column, Nicole's Corner! Looking for a job in this economy can be tough for anyone, but it is especially difficult for patients with chronic illnesses. Employers seem to be less likely to hire such patients, and, at the same time, we may be unsure of what jobs we can take on given our limitations. For example, a patient with chemical sensitivities whose job used to require that she visit peoples' homes, and thus, be exposed to the chemicals that triggered her reactions, is still capable of working, but not in the position she once held. This is where vocational rehabilitation can help.
Vocational rehabilitation (VR) is a service provided by every state in the country that helps patients with chronic illnesses and other disabilities find and maintain employment. VR programs differ by state, but in general, they first conduct medical and/or psychological assessments in order to determine your eligibility, and then provide counseling as they work with you to find a job that matches your skills, interests, and abilities. The program varies for each individual. For example, the patient described above might receive job training in a new field, while others might benefit from help with their resume-writing and interview skills. Still others might benefit from the myriad number of other services that VR programs provide. Moreover, some VR divisions not only help individuals with disabilities find suitable employment, but they also educate employers on the benefits of hiring such individuals. You may participate in VR - so long as you're eligible - regardless of whether you're receiving unemployment or disability benefits and regardless of whether you've been out of the workforce for a long time or just left. This is a great resource for anyone with a chronic illness hoping to find and maintain employment. To find your state's VR program, just search the internet for Vocational Rehabilitation and the name of your state and the link should come up. It's definitely worth looking into. And it's free.
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The Chronicity Project
This is the space in our newsletter where we talk about health care policy affecting the chronically ill.
Here's an update on what's happening in the legislative arenas:
Federal
As you know, the supercommittee failed to come up with a plan to cut the deficit, so automatic cuts will kick in -- although members of Congress would like to rethink them now that they are reality. Meanwhile, there's a lot of talk about creating a voucher system for Medicare, letting private insurers run the program -- what a huge mistake that would be. And only five federal agencies are funded for 2012; the rest run out of money on December 16. Finally, the payroll tax cut that saved you about $1000 this year will expire at the end of the year unless it's renewed. So December better be a busy month in Washington. Can they agree on anything?
We're hard at work on our amicus ("friend of the court") brief for the health reform case in the Supreme Court. We'll be explaining how critical it is for people with pre-existing conditions; insurers won't be able to exclude us after January 1, 2014, but if the Court overturns the individual mandate, there's a good chance this day will never come, and we will continue to be second-class citizens when it comes to health insurance.
The National Association of Insurance Commissioners has recommended a major change to the medical loss ratio. As you recall, the medical loss ratio is 80% for individual plans and 85% for group plans -- that's the percentage of premium dollars that go to health care costs. Originally, broker/agent commissions were on the administrative side, so they were not included in the 80-85% that had to be spent on health care. As of a couple of weeks ago, the NAIC recommended that broker/agent commissions be shifted to the health care side -- a gift for insurance companies, who now can spend that much more on administrative costs, including salaries and bonuses. Our best chance at controlling the rate of health insurance premium growth has just taken a big hit.
Contact your members of Congress and tell them what you think. To find your Representative, go here; to find your Senator, go here.
Connecticut We continue to work on pushing for meaningful review of insurance premium rate increases. In addition, we are doing what we can to try to correct the composition of the Insurance Exchange Board, which has no consumer representatives on it. Of course, the members of the Board have claimed to be consumer representatives, causing me to write an op-ed that explains not only what we mean by consumer representatives, but what we bring to the table that others can't. Your State
What's up in your state? Haven't heard much lately. Have a story you think is important? Let me know. In the meantime, keep up the fight. First, be aware. Read your local newspapers. Find the website for your state legislature. Read. Write your state legislators about things that concern you. One tool we like is the Kaiser Health News, to which you can subscribe for free. But don't just read: ACT. Go to hearings and testify. Tell your story. Put a real face on the healthcare crisis. |
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Jennifer C. Jaff, Esq.  Executive Director
Advocacy for Patients with Chronic Illness
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