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December 2009 Newsletter

In This Issue
Taking it to the Courts
Health Care Reform Update
New Film Highlights Quality Improvement Project
The Chronicity Project
Quick Links
 
 
TAKE THE NIH SURVEY!

We've hit our target of 1500 respondents -- so thank you -- but we've decided to continue to accept responses for a few more months.  So you can still take the survey here!  Whether you are a patient or a caregiver, there's a version of the survey for YOU!

As you know, in partnership with the
Center for Managing Chronic Disease at the University of Michigan, we have received a grant from the National Institutes of Health.  The purpose of the study is to examine the challenges faced by the chronically ill, and ways in which interventions can be more effective in addressing those challenges. 

You can TAKE THE SURVEY NOW online, or you can take the survey over the phone if that would be easier for you. 

If you want to take the survey by phone, just give us a call at (860) 674-1370 and we'll set it up for you. 
Thank you!

Art for Advocacy!
Our dear friend and artist extraordinare, Julia Lucich, has agreed to paint your portrait with all proceeds going to Advocacy for Patients with Chronic Illness.  This is a limited time offer, so don't delay.  Check out Julia's website here, and email her at the contact info on the website if you're interested in having a Julia original in your home, or presenting one as a gift.
Look What I Just Found!
The Genetic Alliance has developed a new tool that allows families and communities to track their health history.  To learn more, and download your own health history tracker, check out Does It Run in the Family

A second find this month isn't really a new find -- it's just newly becoming public, and that's Lybba.  Created by the famed director Jesse Dylan (who's made a lot of things you've seen, including the Obama Yes We Can video), Lybba will be a website that will make all of the world's medical knowledge available to all patients for free.  Complements of Advocacy for Patients, it also will include information on legal, insurance, and financial assistance issues. 

For now, Lybba ia a splash page with a growing presence on Facebook.  Sign up now for updates and get in on the ground floor.  Lybba is the future of health care on the internet, complete with social networking.  Check back here montly for updates.

It's Too Hard to Be Sick in America

Our new book, It's Too Hard to be Sick in America, is now 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.
Advocacy for Patients on the Move!
 
January 27: Presenting at grand rounds at the Hospital for Special Surgery's rheumatology department.
 
Come say hello! 
Know Your Rights Handbook
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Want to be your own advocate?  Learn how by ordering the Know Your Rights Handbook today.  Click here for more information.
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Get Your Guts In Gear
 Advocacy for Patients is a beneficiary of Get Your Guts in Gear's 2009 Rides.  To learn more about the 2009 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 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
 
For Connecticut residents ONLY:

Advocacy for Patients Needs Your Help!

To keep providing these services for FREE, we need your help.

 

 WE DO NOT SOLICIT DONATIONS OUTSIDE OF CONNECTICUT
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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Taking it to the Courts
 
As you know, Advocacy for Patients doesn't litigate.  We can't be in all 50 states at once, and most of the time, we resolve cases short of litigation.

Most of the time.

On November 10, 2009, lawyer Mac McCool (yup, real name!!!) filed suit in Mississippi federal court for one of our patients.  Paige Riley has gastroparesis.  About five years ago, she got a gastric electrical stimulator.  It was a fight, but her husband's insurer paid for it.  Then her battery died and the same insurance company paid for a new battery.  And then her battery died a second time.  This time, her husband's employer's insurance is administered by Blue Cross Blue Shield of Mississippi.  And they're a brick wall -- they refuse to even give a pre-service denial, so the patient has to have the surgery and take his or her chances. 

Well, I pushed and pushed the plan and we could get a pre-service denial, but nothing more.  So I reached out to lawyers in Mississippi, and that's where Mac McCool comes in.  Mac agreed to take the case.

On November 10, 2009, the plan and its administrator, Blue Cross Blue Shield of Mississippi, were sued.  There's a Forbes article with more detail if you want it.  If you needed an example of how irrational insurance decisions are, here's a good one -- a device that we know works 100% to control Paige's symptoms, needs a new battery, and they've covered it before.  So why not now? 

Now, it's in the hands of a federal court to make them explain.
Health Insurance Reform Update

Well, we now have a House Bill, and Senator Reid has introduced a Senate version that will be debated in the coming weeks.  There's a lot to like in both plans -- and a lot that's still unknown.  Here are some of the highlights.

Both plans eliminate pre-existing condition exclusions, lifetime caps on benefits, premium rates based on gender and health status/history, and cancellations of policies based on health status/history. 

Both plans have insurance "exchanges" or marketplaces where you can research all of your insurance options.  And both plans have, as one such option, a public option.  Both public options would have provider reimbursement rates that are negotiated, and are not tied to Medicare reimbursement rates.  States could opt out of the public option.  The Senate plan also allows nonprofit co-ops to start health insurance plans, and states can create a program for low income individuals who are not eligible for Medicaid.

Out of pocket costs and premiums are limited, and subsidies or tax credits for people who earn under 400 percent of the federal poverty level.  The out-of-pocket caps are higher under the Senate version, but both would eliminate the possibility of catastrophic losses, thereby (we hope) eliminating medical bankruptcy.  And both plans increase Medicaid eligibility to 133 percent of the federal poverty level.

Both plans delay implementation of the exchanges -- the House until 2013 and the Senate until 2014.  In the meantime, both Bills establish national high risk pools.  You would qualify for the high risk pool if you have a pre-existing condition and have not had insurance for at least 6 months.  The House Bill is slightly broader and allows you to enroll in the high risk pool if you've been turned down for affordable insurance. 

Both plans also make some improvements to Medicare, reducing the doughnut hole (the prescription drug coverage gap) by $500 and providing discounts for drugs during the coverage gap, at least for low and middle-income consumers. 

Both plans include a requirement that individuals have insurance.  The House penalty is greater than the Senate's, but neither is high enough for the insurance industry to feel comfortable that they will get a lot of new healthy enrollments to balance out the new enrollees with pre-existing conditions.  The House requires employers to provide insurance, whereas the Senate does not.  However, the Senate does impose a fee for each employee who is not covered and gets a tax credit.

The two plans pay for themselves in different ways -- this may be the biggest difference between the two.  The Senate taxes so-called "Cadillac plans" -- plans that cost more than $8500 for an individual and $23,000 for a family -- at 40%.  In addition, the Medicare payroll tax is increased from 1.45 percent to 1.95 percent for people earning more than $250,000.  The Senate draft also imposes a 5 percent tax on elective cosmetic procedures (procedures needed to correct congenital and other deformities are exempt).  In addition, the Senate would impose a $2 fee per person on insurers and health plans (including self-funded plans).  The House, instead, imposes a 5.4 percent income tax on individuals earning more than $500,000 and families earning more than $1 million. 

And then there is abortion.  The House bill prohibits all plans sold through the "exchange" from covering abortions for women receiving subsidies except to save the life or health of the mother.  The Senate bill attempts to segregate the private money from the tax credit (or subsidy), and prohibits the use of public funds to pay for abortions.  This is one of the toughest issues Congress is grappling with, and could entirely derail health reform.  The pro-lifers don't believe in an approach that uses accounting rules to segregate public and private funds; they believe anybody who gets a subsidy or tax credit cannot have abortion coverage.  The pro-choicers believe this seriously curtails their right to choose to have an abortion.  Frankly, I feel literally torn apart over this issue; I am very pro-choice, but I also really want health reform.  I remain hopeful that a compromise will be reached.

Both Bills prohibit illegal immigrants from participating in plans sold through the exchange, including the public option, and also including any plan towards which a person could receive a subsidy or tax credit.

The NY Times has created an excellent comparison of the two plans here.

This is, of necessity, a summary.  I hope that you will read and listen, educate yourself, and then contact your members of Congress and tell them what you like and what you don't.  And when you hear the lies -- and yes, there are still people out there talking about "death panels" despite the fact that this issue has been disposed of completely -- speak up and be heard.  Even if you are troubled by some aspects of these proposals -- indeed, even if you really hate the whole idea of reform (although how can a person with a chronic illness not want SOME reform?) -- let's make sure we're all telling each other the truth.

For information about some of the truths and  untruths of health care reform, see White House Reality Check and Factcheck.org, as well as our blog.

You can reach the Congressional switchboard at 1-866-210-3678.  To find your Representative, go here; to find your Senator, go here.
New Film Highlights Quality Improvement Project

My friend Jesse Dylan just debuted a new film about the ImproveCareNow Collaborative, a network of pediatric gastroenterologists around the United States who are working to learn new tools for treating pediatric inflammatory bowel disease.  Watch the film now.

http://www.youtube.com/watch?v=beG2eMROWqg
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
 
Other than health care reform, this is important:

If you're a patient with an immune or autoimmune disease, you may be interested in S. 701 and HR 2002, bills to improve access of Medicare beneficiaries to intravenous immune globulins (IVIg).  This is critically important legislation designed to eliminate some of the existing obstacles to getting this much needed treatment.  So contact your members of Congress to support this legislation.

To find your Representative, go here; to find your Senator, go here.

Connecticut
 
Jennifer will be receiving a citation from the Connecticut General Assembly on December 10 in the State Capitol Old Appropriations Room for her work on the Connecticut Restroom Access Act.  All are invited!

As always, it's never too late to contact your State Senator or Representative and thank them for their votes.
 
Your State
 
So many of you ask me what you can do.  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. 

Jennifer C. Jaff, Esq.
Executive Director
Advocacy for Patients with Chronic Illness, Inc.
 
Need help?  Call us at (860) 674-1370 or email us at patient_advocate@sbcglobal.net.