April 2012 Newsletter
In This Issue
Post Mortem
Flight to Mars
Nicole's Corner
The Chronicity Project
* NEW *

Know Your Rights Handbook
2012 handbook cover
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 or order today on our website or on Amazon.com.

Look What I Just Found! 
JustHealth is a very cool organization that helps with all things related to health insurance.  They advocate for consumers in all things related to health insurance.  At the moment, they are encouraging people to support the Health Insurer Accountability Act.  All it does, on its face, is make insurance companies tell us the truth.  They also represent consumers in disputes with insurance companies, doctors, hospitals.  We have just "met" them recently, but they look to us like a good resource, so check them out!


Living with Chronic Illness: A Prescription for Advocacy
chronic illness paper cover
Read the results of our chronic illness survey, available FREE here.
What I'm    Reading   
  If you don't order this book NOW, you're missing out on a really incredible read.  Blue Water, White Water by Robert Samuels chronicles the author's journey through diagnosis of and treatment for Guillian Barre syndrome -- a neurological illness that strips the myelin from the nerves, causing numbness and even paralysis.  Mr. Samuels's case was particularly bad; he spent almost three months in the hospital completely paralyzed, on a ventillator, unable to communicate except by moving his eyes.  His tale is really hair-raising.  But what I realized as I read this book in only several hours is that the stories he tells about how he was treated by nurses and doctors -- most pretty negative -- are universal.  Although I've never been paralyzed or on a ventillator, thank goodness, I have been in a hospital bed right after major surgery, unable to ambulate on my own, at the mercy of a nurse or an aide to bring me whatever I needed.  Mr. Samuels's writing is very accessible, making the book a very quick read.  In truth, I think it ought to be required reading for all doctors and nurses.  But I suspect that the best we can do is to spread the word about this absolutely must-read book among patients.  At least we'll know, it's not just our doctor, our nurses -- and it's definitely not US!  Do yourself a favor and read this book.  I promise you will never forget it.


  Handbook cover
Get Your Guts In Gear
Ready to ride?  The 2012 schedule is up. 

New York: June 8-10, 2012 in the beautiful Hudson River Valley

Midwest: September 7-9 in Wisconsin

To learn more about Get Your Guts in Gear, see their website for details or call 866-9IGOTGUTS (866-944-6848).
Advocacy for Patients on the Move!  

We hibernate in the winter if we can, but we're starting to book for the spring, starting with the following:

April 21: CCFA Chicago

May 16-20: Mike McCready and Flight to Mars, Los Angeles

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.
It's Too Hard to Be Sick in America

2010 handbook cover

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.

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.

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.


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Post Mortem
The Supreme Court arguments in the health reform case are behind us now; all that is left to do is to wait for the decision.  I could give you a blow-by-blow, but you can get that from my blog just as easily.  I toyed with the idea of not writing about health reform at all this month, but since that's been the non-stop focus of my life for the past month, it would be hard for me to write about anything else.  So this is about health reform -- but also about the Supreme Court.

I was struck when Justice Scalia asked questions that seems baldly political -- we don't know if Congress would have passed this law without the individual mandate, so how can we uphold the rest of the law if we strike the mandate down?  The question of severability -- whether the constitutional parts of a statute can stand after the Court strikes down an unconstitutional provision -- has come up hundreds, if not thousands, of times in the past.  I've never heard a Justice worry about whether there would have been the legislative votes absent one provision or another.  But there was Justice Scalia saying that Senator Reid "bought" Senator Nelson's vote for the law in exchange for giving Nebraska special Medicaid coverage (a provision that was removed from the Bill, showing that Justice Scalia hadn't quite done his homework on this one), as if that should make a difference to the question of whether the law is constitutional or not.

Similarly, as has been pointed out by my friend, Dean Jeremy Paul of UConn Law School, the Court seemed fixed on the extent to which Congress was intruding on the lives of Americans.  That question is one properly asked by those involved in public policy; it has nothing to do with the constitutional reach of the Commerce Clause.  It is a question that already was decided by Congress and the President; the Court has no role in that discussion.

So yeah, I'm plenty nervous about what the Court is going to do.  Justices Kennedy and Roberts were the hardest to read, and they are the swings.  If they go conservative, we lose.  If they go liberal, we win.  But really, when the Supreme Court of the United States becomes this unflinchingly political, we all lose.  Instead of an analysis of precedent -- which really could only lead to upholding the law -- there was a lot of analysis of politics, including whether the currently paralyzed Congress would be able to fix the law if the Court strikes down the mandate but leaves the rest standing.  As the great Jonathan Cohn has written, "[the Justices'] job is to determine whether a law is constitutional, not whether a law is wise."

And then you have Justice Scalia saying that he had no intention of reading the whole law to figure out which provisions were tied to the mandate and which were not.  What followed was a slightly humorous exchange about Justice Scalia's clerks doing that work instead -- but there is nothing funny about what happens if this law is struck down.

There are plenty of ideas circulating about how to salvage the law if the individual mandate is struck down -- you could auto-enroll anybody who shows up at an emergency room without insurance; you could provide incentives for people to buy insurance like discounted gym memberships; you could provide disincentives for people to refuse to buy insurance, like a waiting period for coverage of pre-existing conditions if they enroll down the road because they get sick.  But that only works if the only thing the Court strikes down is the individual mandate.  However, the Obama administration asked the Court to strike down the provision prohibiting pre-existing condition exclusions (called guaranteed issue) and the provision prohibiting basing rates on health status or gender (called community rating) if the Court strikes the mandate.  And the states asked the Court to strike down the whole law.  They argued that the mandate is the heart of the law, and once you take that out, the law is a shambles that Congress never intended to exist in that form.  If the Court takes either of these approaches -- especially if the Court strikes down the whole law, including the provisions you like that have already gone into effect -- we won't be trying to come up with a way to replace the mandate.  We will be starting with the status quo ante, before health reform. 

Remember how things were when 2.5 million young adults aged out of their parents' policies and became uninsured?  When self-funded plans had no external appeals, so we had no ability to get an independent review of coverage denials?  When seniors didn't have prescription drug discounts, when preventive care was not free, when there were lifetime limits on benefits? 

What was lost throughout the three days of arguments was any discussion -- ANY discussion -- of the people who would be helped with health reform, and who would be greatly harmed by its repeal.  Only at the very end of the arguments did Solicitor General Verilli decide to say a few words about the good the law would do.  There was talk about constitutional principles, limiting principles, boatloads of money going to the states for Medicaid expansion, Justice Scalia's clerks, Justice Scalia's wife (to the point at which the Chief Justice had to ask him to lose the frivolity), whether the government can force us to buy broccoli -- but NOT ONE WORD about patients.  It's as if this law is not about anybody, as if it does not represent life and death to some.  Not one word about the fact that, in most states, people with chronic illnesses cannot buy individual insurance -- period. 

And so, in the end, we were lost in the whole thing, as we are lost in the system.  Without health reform, we go back to the way things were, when there were no insurance options for us, when we couldn't get independent review of an insurer's coverage denial of treatment for a rare disease, when hemophiliacs and others with expensive medical needs had to switch jobs every so often because they kept hitting lifetime limits on benefits.  The Obama administration did all it could to protect insurers by asking the Court to strike down guaranteed issue if they strike down the mandate -- it would be awful if insurers had to cover people with pre-existing conditions if healthy people weren't required to join the pool, as well, right?  But nobody spoke for us -- who, without guaranteed issue, have no options at all. 

Six hours of argument and not one mention of what it's like to be sick and uninsured in America. 

And so it is likely to come down to politics rather than principles -- which is not entirely uncommon -- without consideration of the people who would be most affected by that Court's decision, those of us with pre-existing conditions.  Getting this close to equal treatment in insurance and losing it before it takes effect threatens to suck the life right out of me.  My hope for the future -- my ability to tell you when you call that we just have to hang in until 2014 -- would be dashed.  And I know I am not alone.  But I might as well be, because there was nobody speaking for us in that courtroom.

Justice Scalia is known for having a great sense of humor, which was on full display, especially on day three of the arguments.  But to me, there was nothing funny about this.  Nothing at all. 


Flight to Mars
Mike McCready
  Mike McCready, of Pearl Jam, and his wife Ashley O'Connor made a decision ten years ago to go public with Mike's struggle with Crohn's disease.  Every year since then, Mike has played a benefit with a band called Flight to Mars -- Gary Westlake, Paul Passereli, Mike Musburger, Ty Bailie and Tim DiJulio -- with all proceeds going to Advocacy for Patients and the Crohn's & Colitis Foundation's Camp Oasis.  The fan-based Wishlist Foundation has organized pre-show fundraisers each year, as well.  The proceeds of the Flight to Mars shows are essential to our ability to continue to provide free services to patients with chronic illnesses.

This year, in recognition of the 10th anniversary of the Flight to Mars shows, Mike and the band will be playing 7 shows rather than one.  If you are anywhere near the West coast, you really should check out one of these shows (or all of them!).  I'll be at the Los Angeles show, rockin' out.  I hope to see you there!

The schedule is:

May 14 - the Observatory - Santa Ana, CA
May 15 - the Casbah - San Diego, CA
May 16 - Hard Rock Cafe - Las Vegas, NV
May 17 - the Troubator - Los Angeles, CA
May 20 - the Independent - San Francisco, CA
May 22 - Hawthorne Theater - Portland, OR
May 23 - the Showbox - Seattle, WA

The Wishlist Foundation has all kinds of VIP packages that you can buy -- with TWO CHANCES to play LIVE with Mike and the band in LA or Seattle.  You can check out the details here, or you can buy or bid for the package you want on eBay here.

Great music, great people, great cause -- what more could you want?!!!  Hope to see you in LA!  Jennifer
           Nicole's Corner:
Two Are Better Than One, Right?

When it comes to health insurance plans, not necessarily. Although most patients with chronic illnesses cannot access health insurance because of their pre-existing conditions, some have access to two plans. This can happen if two spouses both are offered insurance through their employer and in a variety of other scenarios. However, if you find yourself in such a situation, be careful before jumping to the conclusion that paying the premiums for two plans always will yield better health care coverage.


          When you have two health insurance plans, one plan becomes "primary" and the other becomes "secondary." This means that the "primary" plan is responsible for your medical bills as usual and the "secondary" plan only pays after the "primary" has been billed first. Unfortunately, this does not mean that the secondary plan will pay for anything that the primary plan does not cover. In fact, most often, the plan that is secondary only provides coverage when the primary plan provides coverage, but does not pay anything when the primary plan doesn't pay. Although this is not always the case - in fact, some older plans that were designed to be secondary plans do, indeed, cover services that the primary policy does not - most of the time, the secondary plan does not provide "back up" coverage in the event of a denial from the primary plan. It only supplements the coverage that the primary plan provides.


          It is very important to figure out which plan is primary and which is secondary. You can do so by looking at a provision in your health plan document, or Summary Plan Description, called a "coordination of benefits" clause. In general, the plan that you're a dependent on most likely will be secondary. This is important because if the secondary plan is billed first, but later finds out that they were supposed to have been billed second, it can take back ALL of the money it paid out. This can go back years and leave you with a HUGE pile of bills if it turns out that it is too late to re-submit those claims to your primary plan. Your plan document also will detail what the secondary plan will cover and what it will not in the event that your primary plan does provide coverage for a particular medical service. As such, if you have two health insurance plans, consult your plan documents as soon as possible and be sure that your providers are billing your insurance companies appropriately.


          Now, if one of your health insurance plans is Medicare, then this gets even more complicated! Too complicated, even, to explain in this limited space, which is why you're welcome to contact us if you have Medicare and another insurance plan and you're unsure which one should be primary. For now, the most important thing to take away from this discussion is to check your plan document if you have any questions and to call us if your questions remain.  

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:


The GOP released a budget which, once again, would convert Medicare into a voucher system so you would get money to purchase private health insurance -- as if there is any health insurance for people over age 65, especially with pre-existing conditions -- and cut Medicaid and many other social programs like food stamps and housing subsidies, while cutting taxes for the wealthy and corporations.  This isn't me editorializing -- I haven't read one press account that disputes that summary.  Some people just seem to think those are all good things, while I disagree (that is me editorializing!).  It also would repeal health reform.

Representative McKinley introduced legislation that would limit cost sharing for prescription drugs in a specialty tier to the dollar amount of cost sharing for prescription drugs in a non-preferred brand drug tier.  It's H.R. 4209.  If you're having issues with specialty tier pricing, now would be the right time to contact your members of Congress.

Contact your members of Congress and tell them what you think.  To find your Representative, go here; to find your Senator, go here.


 We submitted testimony in support of legislation that would limit copays on prescription drugs -- an effort to limit the effect of specialty tiers -- here.  We also testified in favor of the creation of a Basic Health Program -- a Medicaid look-alike that would serve as a bridge for people whose income is just over the Medicaid limits but not quite what would be needed to purchase commercial insurance -- here.  To find your Representative, go here; to find your Senator, go here.

Great news on health insurance premium rate review.  At the request of Commissioner Leonardi, the insurers have agreed to provide written notice of a rate increase to consumers. Consumers will get a letter from their insurer when their insurer files for a rate increase, and consumers will have an opportunity to submit comments to the Insurance Department through their web portal.  I'm very proud that this important consumer protection could be achieved without legislation, through discussions between an open-minded Insurance Commissioner and thoughtful consumer advocates, all of whom realized that working together on this issue made sense.  Thanks to Commissioner Leonardi and his staff for doing the right thing by Connecticut's consumers.
Your State

Maine's specialty tiers bill (LD 1691) was passed, although, as of the time of this writing, I do not believe the Governor has signed it yet.  However, the language is somewhat vague, so it may not have the "teeth" we would like it to.  Still, it's a great start.

The hearing on the Rhode Island specialty tiers bill (H.7573) was held on March 8. The bill is heavily contested. There was a lot of opposition from the insurance companies. Chairman Kennedy and the committee voted to commission a study on the issue.   

There was a hearing in Vermont on the specialty tier section of H.559 (see page 74, Section 32). The hearing was held at 9 AM only 15 minutes after it was put on the Committee's schedule. Serendipitously the MS Society had one of their top patient advocates in the building and he spoke in favor of the bill. There were a number of reps from the insurance companies there too. The MS Society's bill sponsor Sally Fox is chair of the Committee and has offered assurance of her confidence that the bill will pass out of Committee positively.

Vermont S.455 (specialty tiers bill) is currently before the Health Care Finance Committee.   


If you live in Washington state, are insured through Premera, and are on 6MP, azathioprine or any other oral "cancer" medication, you already know that Premera used a bill intended to make these drugs less expensive for cancer patients as a way to charge a huge coinsurance (percentage of cost rather than flat rate) instead.  With the help of Representative Jinkins, we have been successful in getting Premera to change this policy effective August 1.  So if you were affected by the increase, hang in -- it's only until August.


Something going on in your state?  Let us 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. 
Jennifer C. Jaff, Esq.                 2010 handbook cover
Executive Director
Advocacy for Patients with Chronic Illness

Need help?  Call us at (860) 674-1370 or email us at patient_advocate@sbcglobal.net.