| 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.
New cover courtesy of Jesse Dylan -- thanks, Jesse!
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Look What I Just Found!
Wendy Shanker, a patient with Wegener's granulomatosis, has a book out September 7 called "Are You My Guru: How Medicine, Meditation and Madonna Saved My Life." It's the story of her health care journey through Western and Eastern cultures to remission. And it is hysterically funny. Yes, funny. Wendy knows that, if you're going to survive with chronic illness, you better have a sense of humor. But there's a serious message here, too. If you're going to survive this journey through chronic illness, you'd better take an active role in your care management. By searching far beyond traditional medicine for answers, Wendy shows us how a patient can heal herself. Wendy's an accomplished writer. Her book A Fat Girl's Guide to Life has been published in 10 languages. Are You My Guru is sure to follow. It's on sale on September 7. Don't miss this one -- it's wonderful. To learn more about Wendy, go here. Jennifer
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Lybba is a website . . . an idea . . . a community. It is the vision of famed director Jesse Dylan. Although it is not yet up live for anybody to access, it aims to combine the world's medical knowledge with social networking, so that patients, medical experts, organizations -- everyone -- can come together to change the way health care is delivered. For now, Lybba is a growing community on Facebook that I hope you will visit. And Lybba's current website will give you a little more background about what it is and what it is meant to be. Sign up there for Lybba newsletters, too, which promise to be filled with wonderful information that Lybba collects from its many friends -- medicine, technology, innovation, support, friendship. Lybba.
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Get Your Guts In Gear
Advocacy for Patients is a beneficiary of Get Your Guts in Gear's 2010 Rides. To learn more about the 2010 Rides in New York, Seattle, and the Midwest, and how you can participate as a rider or volunteer crew member, see their website for details or call 866-9IGOTGUTS (866-944-6848). |
Advocacy for Patients on the Move!
October 21: Association of Gastrointestinal Motility Disorders webinar
October 23: CCFA Manhattan
November 5: Thrive webinar
Come say hello! |
It's Too Hard to Be Sick in America
Our newest 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 Connecticut. Nevertheless, generous donors from many states make unsolicited donations for which we are very grateful.
THANK YOU!
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Six Month Anniversary of Reform - Changes Take Effect
Several important provisions of the health reform law will take effect this month. September 23, 2010 marks the six-month anniversary of the signing of the reform law. While you may not feel like celebrating that fact, it's important to know that several of the law's provisions will kick in on that date or shortly thereafter.
First, two caveats. The effective date of these changes varies with your plan. For example, if you are in a group plan that works on a calendar year basis beginning on January 1, then these changes take effect for you on January 1, 2011 -- the beginning of the next plan year after September 23, 2010. If you are in an individual plan that renews on March 1, then the changes take effect for you on March 1, 2011 -- the beginning of the next plan year after September 23, 2010.
Second, some provisions do NOT apply to "grandfathered' plans. As you will recall, President Obama promised that if you are happy with the plan you have, you can keep it. Well, this is how he kept that promise. If you have a plan that existed on March 23, 2010 and does not change in any substantial way (keep reading), it is a grandfathered plan. A plan loses its grandfathered status if it changes in one of the following ways: (a) increased copayment of more than $5 or above medical inflation plus 15 percentage points;
(b) increased deductible above medical inflation plus 15 percentage points; increased out-of-pocket limit above medical inflation plus 15 percentage points;
(c) an increase in coinsurance rates;
(d) a decrease in the annual limit or adoption of a new annual limit after March 23, 2010;
(e) a decrease of more than 5 percentage point below the existing employer contribution rate as of March 23, 2010; or
(f) the elimination of all or substantially all covered benefits to diagnose or treat a particular condition after March 23, 2010.
Any new plan is NOT a grandfathered plan, so if your employer switches to a different insurance company, or if you buy a new individual policy after March 23, 2010, that plan is NOT grandfathered.
As I go through each of the changes that takes effect on September 23, 2010 or the beginning of the next plan year after that date, I will indicate which ones apply to grandfathered plans and which do not.
- Young adults can stay on their parents' health plans to age 26. This DOES apply to grandfathered plans, but if the young adult become eligible for group insurance through a job, he or she becomes ineligible to stay on his or her parents' plan.
- There are no more pre-existing condition exclusions for children under 19 years of age. This DOES apply to grandfathered group plans, but it does NOT apply to grandfathered individual plans.
- Preventive services are covered for free. There are no copays or coinsurance for preventive services. I talked about this provision in last month's newsletter. This only works if your doctor bills the preventive care under a separate code or if you go to the doctor visit only for preventive care. This does NOT apply to grandfathered plans.
- Annual limits are only allowed if they are reasonable. Reasonable annual limits are: $750,000 for the plan year beginning on or after September 23, 2010 but before September 23, 2011; $1.25 million for the plan year beginning on or after September 23, 2011 but before September 23, 2012; and $2 million for the plan year beginning on or after September 23, 2012 but before January 1, 2014, at which point annual limits will not be allowed at all. This DOES apply to grandfathered group plans but does NOT apply to grandfathered individual plans.
- Lifetime limits are not allowed -- period. This DOES apply to all grandfathered plans.
- Health plans are not allowed to rescind (essentially, cancel) your insurance retroactively because you got sick, unless you committed fraud on your application. This DOES apply to all grandfathered plans.
- Women have direct access to ob/gyns without a referral; pediatricians can be classified as primary care providers; enrollees have a choice of primary care provider. This does NOT apply to grandfathered plans.
- No prior authorization requirement for emergency care, and no higher cost-sharing for out-of-network emergency care. This does NOT apply to grandfathered plans. It's also somewhat illusory; you can be balance billed by an out-of-network emergency room/doctor, so if your insurance pays less than the billed amount, you may be responsible for the rest of the bill.
- The new appeal rules that I talked about in my last newsletter will kick in. This does NOT apply to grandfathered plans. It means, though, that you will have a right to both internal and external appeals (in other words, independent reviews) of denials of coverage.
All of these provisions take effect on September 23, 2010 or the start of the next plan year after that date. This takes effect in every state, regardless of your insurance company, unless you are in a high risk pool. These rules apply only to plans sponsored by an employer or issued by an insurance company, not to high risk pools.
If you have questions, as always, I'm here at the ready. Call me at 860-674-1370 or email me at patient_advocate@sbcglobal.net
Jennifer |
Stories
I want to share with you a few stories, notable things that have happened in the last month, some good, some bad. They don't really have anything to do with each other except that they all have to do with how I view humanity.
First, we were contacted by a children's hospital about a very sick little boy with extraordinary medical needs. One of the things he needed was a special pulmonary vest to help him breathe. His insurance wouldn't cover it; it costs $16,000 and his policy limit for medical equipment is $4500. I wrote to the President and CEO of Hill-Rom, the wonderful company who makes the vest, asking if they would donate one. They said yes. Not only does that mean that he will have the vest he needs, but it also helped his parents feel hopeful, because there was a perfect stranger out there running a huge corporation who was willing to help them out.
Not so for Jane and Mary, though. Jane has gastroparesis. She's tried everything and nothing has worked. She has a feeding tube and is in and out of the hospital very often. Although we have filed over 100 appeals for the gastric electrical stimulator that Jane needs, and we never have lost one for a patient with a feeding tube before, her plan administrator -- controlled by her husband's employer -- refused to pay for it. This makes no sense; the cost of hospitalizations and tube feedings are extraordinary. But I filed three appeals, sent over 1000 pages of medical records and medical journal articles about the use of gastric electrical stimulation for gastroparesis, and still, we got a no. I've found a lawyer to go to court in Indiana for her, but the patient is so sick that she's having trouble even contemplating her next steps.
And Mary has metastatic lung cancer. She was on Avastin plus two chemotherapy agents and it made her very sick, so her oncologist took her off one of the chemotherapy agents. She's doing really well. The cancer appears to be in remission and she doesn't get sick from her treatments any more. But her insurance company won't pay for Avastin when it's not used with the chemotherapy that was making her so sick. We do have at least one more level of appeal, so I haven't given up yet.
In both of these very sad, difficult cases, I keep trying to remind myself that, very soon, these sorts of decisions will be subject to independent review as long as these are not grandfathered plans. That may not help Jane and Mary, but hopefully it will help others.
It's very hard to accept a no when it's about saving someone's life. All I can do is keep on fighting. And be grateful when a company like Hill-Rom restores my faith in humankind. Jennifer
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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
We're still filing a lot of comments to regulations implementing health reform. Our comments to the regulations implementing the requirement that insurers cover children to age 26 are here. Our comments to the regulations implementing the requirement that the federal government create a web portal that will allow you to find and compare your insurance options are here. Our comments to the regulations implementing the requirement that insurers spend over 80% of premium dollars on healthcare-related costs are here. We also filed comments on HHS's draft strategy for management of multiple chronic conditions, which you can find here. Our comments to the regulations governing the new pre-existing condition insurance plans are here.
We contributed and sign on to comments written by a national coalition to regulations that determine which health plans will be "grandfathered" and, so, not subject to some of the reform provisions. In addition, we have drafted comments to the preventive care regulations, on which we're partnering with the Digestive Disease National Coalition. You can read them here. In addition, we are in the process of finalizing our detailed comments on the new appeals provisions, drawing from our experience filing insurance appeals on your behalf nationwide.
To find your Representative, go here; to find your Senator, go here.
Connecticut
The Connecticut legislative session has ended, so we're focusing on SustiNet design (for more info, go here). As always, it's always good to contact your State Senator or Representative and tell them how you feel about things. Your State
Louisiana passed a law outlawing what they call "fail first" prescription drug plans, or what others call "step therapy." Under this sort of plan, the insurance company can make you try a bunch of what they claim are medically equivalent, less expensive alternatives to what your doctor has prescribed before paying for the version your doctor has chosen for you. California's looking at a similar provision. Thanks to Dominick Spatafora for the info. Is there something happening in your state's legislature? Shoot me an email and I'll add it to our next newsletter. 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
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