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2012 EDITION
Know Your Rights Handbook | 
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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.
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Look What I
Just Found!
This is the coolest thing since sliced bread. HealthLeads is a program in which college students volunteer at hospitals and doctors write "prescriptions" for food, housing, heating assistance and so on. The patient brings the prescription to a volunteer, and the volunteer helps find resources in the community. What an incredibly great program!
I also found a website that helps you to find doctors -- with reviews and ratings for parts of the country. It's called ZocDoc and I think it's worth bookmarking. They also have an app for your phone or tablet. I suspect that, as they continue to add more doctors to their site, ZocDoc will become even more useful to us patients.
Finally, there's Simplee, a way to track your medical bills and check them for accuracy. You can track insurance payments and even store your medical records. I only just found it, and I can't promise you it works as advertised without using it first, but it's worth taking a look.
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Living with Chronic Illness: A Prescription for Advocacy | 
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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 still catching up on Dr. Larry Berkelhammer's blog. Dr. Berkelhammer is a proponent of mindfulness -- essentially, meditation -- and he teaches how the mind can help us live and cope with chronic illness. It's endlessly fascinating and challenging. For example, he says: "An untrained mind leads us to get battered about and bullied by thoughts and feelings. A trained mind observes thoughts and feelings without getting hooked by them, simply observing them as if watching clouds float across the sky. This is very freeing, and it is a path out of unnecessary suffering." Doesn't that make you want to read more? It sure does for me.
Also, my friend Jon Reiner's great book, The Man Who Couldn't Eat, is out in paperback. If you haven't read it, you won't want to miss it!
Have a suggestion? Let me know!
Jennifer
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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
I heard the New York ride was wonderful, so if you're in the midwest, please check out this opportunity to have fun and raise money for a great cause!
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, starting with the following:
July 20: Platelet Disorder Support Association, Denver, CO
November 10: CCFA Nashville (tentative)
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
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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We Won!
Last week, the Supreme Court upheld the Affordable Care Act (ACA), further cementing the most important civil rights victory EVER for people with chronic illnesses.
As you know, the ACA will require insurers to cover people with pre-existing conditions starting January 1, 2014. In addition, from that date forward, insurers will not be allowed to set premium rates based on health status (or gender, for that matter). However, doing all of that would bring a load of people with pre-existing conditions -- meaning every one of us with a chronic illness and then some -- into the insurance market without doing anything to control costs. States that tried to do that in the 1990s saw premiums skyrocket, insurers leave the market, and healthy people abandon the then more expensive insurance entirely.
Thus, when Massachusetts decided to enact health reform, it included coverage of pre-existing conditions, premiums not based on health status -- and the individual mandate that has been so controversial. The individual mandate drives healthy people into the pool, thereby spreading the risk and keeping insurance affordable. It worked in Massachusetts, so when Congress was developing its health reform plan, it included the individual mandate, as well.
It's important to remember that the individual mandate was a conservative idea, borne of conservative think tanks. It's not that all people without insurance can't afford it; it's that some people choose not to buy insurance simply because they don't want to. When they get sick or injured and end up in a hospital and can't pay their bill, it's covered by billions of dollars of uncompensated care funds that come from the federal government -- in other words, your taxes and mine. Providers who get stiffed pass on their losses to insurance companies, which pass it on to us in the form of an estimated $1000 per family per year of additional insurance premiums. So conservatives balked at these "free-riders" and decided to make them pay their own way by requiring them to buy insurance.
Immediately upon passage of the ACA, the same conservatives who used to support the mandate decided it encroached on their liberty, taking away their choice of whether to buy insurance. The Supreme Court answered that claim: "Under the mandate, if an individual does not maintain health insurance, the only consequence is that he must make an additional payment to the IRS when he pays his taxes." Indeed, the Court recognized that some people will prefer to pay the IRS $60/month rather than spending $400/month on an insurance premium. That remains a choice. But at least they are not "free-riding" on the backs of the rest of us. They are simply paying their own way. What's so wrong with that?
Let's be very clear up front: Nobody who cannot afford to buy insurance will have to buy insurance. In fact, only a very small percentage of Americans are expected to be affected by the individual mandate. If the cost of insurance is more than 8 percent of household income, even with the subsidies that will be paid to people who earn up to 400% of the federal poverty level (between $80-90,000/year for a family of four), the members of that household are exempt from the individual mandate. The mandate is aimed not at people who would buy insurance if they could; it is aimed only at people who choose to go without insurance, taking a risk for which the rest of us pay. As the Court said, "it is reasonable to construe what Congress has done as increasing taxes on those who have a certain amount of income, but choose to go without health insurance." That's all.
The Court's decision on the Medicaid expansion is more troubling. The Court said that the federal government could not threaten to take away states' Medicaid funding to get them to expand their Medicaid programs to cover adults up to 133% of the federal poverty level. That kind of threat is coercive, they said. So they voted to allow the Medicaid expansion to stand, but only if states voluntarily participate in the expansion. That means that there will be states -- most likely states that are against health reform and that already do as little as they're allowed to do for the poor, like Mississippi, Florida, and Texas -- that may choose not to expand their Medicaid programs. That means the poorest of their residents will not have health care coverage. We have to remain vigilant, make sure our state legislators, our governors, know that we care about these most vulnerable, who should not be left out in the cold.
Indeed, we have to remain vigilant about all of this, still. House Speaker Boehner has already scheduled a repeal vote for July 11 -- largely symbolic since it can't pass the Senate, and if it did, President Obama would veto it -- and Governor Romney has pledged to take steps to repeal the law if he becomes President. If he wins and his party controls the House and the Senate, that could happen. It will get harder every day; the more Americans become used to the benefits of the ACA, the less they will be willing to part with them. Six months from now,
- states will be well on the way to having exchanges or marketplaces where we can shop for insurance;
- more kids under age 26 will be on their parents' plans;
- seniors will see even more savings on prescription drugs;
- lifetime limits on benefits will be history and annual limits will be almost phased out;
- people will be receiving free preventive care;
- kids under 19 with pre-existing conditions will have been covered for quite some time; and
- we'll all have come to realize the tremendous value of having independent reviews of insurance company denials so insurers don't have the last word.
In short, the more the law is implemented, the happier people are going to be with it. And don't forget the more than $1 billion in rebates that insurers will pay this year because the health reform law made them limit their administrative expenses (called the medical loss ratio).
But most of all, you and I with chronic illnesses will be that much closer to being truly equal. When insurers have to cover pre-existing conditions and premiums can't be based on health status, our illnesses will become irrelevant for insurance purposes. With equal access to insurance comes equal access to health care, and with that comes greater productivity, fewer periods of disability, and happier, healthier lives for us all. For us, equal access to health insurance is liberating.
And so, for us, the Supreme Court's decision is a civil rights victory. Just as Brown v. Board of Education meant equal access to education for African-Americans, NFIB v. Sebelius means equal access to insurance for people with chronic illnesses. Just as education is a path to true equality for African-Americans, health insurance is a path to true equality for people with chronic illnesses.
I don't want to overstate this -- we have not suffered through generations of slavery, of course, as African-Americans did. But my point is that, for us, this is about civil rights. This has an importance to us that goes beyond being able to get health insurance. How many of you have wondered whether your boss is writing you up or trying to find a reason to fire you because you are sick so you drive up the company's health care costs? That can't happen when premiums can't be based on health status. How many of you have lost your job and, thus, your insurance, only to find out that you have no alternatives, and from there, you got sicker and ended up on disability, defeated and ashamed? This is what I hear from you every day. Well, no more.
And so the ACA is, for us, a civil rights statute. Mandatory coverage of people with pre-existing conditions is a civil rights victory. The Court has reaffirmed that victory. With continued vigilance and advocacy on all our parts, making sure our elected officials know we are not prepared to give this up, it will become our reality in 2014. We are just that close.
Congratulations. And between now and January 1, 2014, never take your eyes off the prize.
Jennifer
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Sign My Petition
After US Airways refused to let me take my bag on the plane home from Los Angeles -- or even a change of clothing and personal hygiene items that I might need were my worst nightmare (in-flight fecal incontinence) to happen, I wrote Customer Service a letter. They defended their action, saying they have to let disabled people take assistive devices on a plane, but not clothing or personal hygiene items. I then wrote the CEO a letter. I waited a month. I faxed another letter saying that I intended to go public absent a response. No response again. So then I went public with an Open Letter from a Crohn's Patient. And then US Airways called again. They said the exact same thing about assistive devices. Clearly, they do not understand that the law pertains to people with invisible disabilities. So I filed a TSA Complaint and started a Change.org petition. I hope you will sign it and share it. It's not about me; it's about the next person who flies US Airways -- and the next and the next. Let's let them know that, although our disability may be invisible, we are not.
Jennifer
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Brittany's Corner
I want to begin this edition of "Brittany's Corner" with an introduction. As someone who has lived with a chronic illness for most of my life, talking or writing about my condition used to make me feel like I was complaining. I guess I thought I would appear stronger if I didn't discuss it. Fortunately, I outgrew this notion. Sharing our stories and experiences creates a sense of community and can actually be very healing. So, in hopes of helping you understand who I am and why I'm so thrilled to be working at Advocacy for Patients, here goes:
As a child, I was diagnosed with rheumatoid arthritis. Unfortunately, my condition is very aggressive and affects every joint in my body. In the seventeen years since I was diagnosed, it has never gone into remission. The first few years were the most difficult. I was just a kid so I didn't understand why I wasn't "normal." My wonderful family, especially my mother, really helped me get through that time. I eventually found a treatment plan that worked for me. I graduated high school with honors, obtained two undergraduate degrees while holding a full time job, and graduated law school while clerking at a local law firm. Then I moved to Connecticut and began a judicial clerkship for two years. Searching for the right job to take after my clerkship was difficult. Typical law jobs were just not inspiring me and I feared I would end up crunching numbers and billing time. When I found out about the opening here, I knew this was my job; all I had to do was convince Jennifer.
As you can see, I somehow succeeded and my first month at Advocacy for Patients has really flown by. I wrote my first appeal and am currently working on two more. Jennifer and I were interviewed for the local newspaper about the benefits of the ACA. I attended a meeting in the Capitol with some of the state's leading advocates and health care officials. I have also been learning a great deal about health care reform and issues chronically ill patients face today. The historic win in the U.S. Supreme Court was made that much more exciting because I am invested professionally in addition to personally now.
I believe the best advocates are those who understand their clients' needs because they have experienced similar hardships. I have had to fight for coverage of medication and treatment. I was removed from my parents' insurance at age 22 and denied for every policy I tried to obtain before law school. I have had to ration my medication because of gaps in coverage or lack of funds. I get it. I really wanted to use my law degree to be part of the solution to the problems so many of us with chronic illnesses face, but I never expected to BEGIN my career doing exactly that. I feel so fortunate to be a part of this organization and to be learning from the best. In the short time I have been here, I have learned so much and been in awe so many times. I can only hope that some of Jennifer's passion and dedication rubs off on me.
I look forward to working with you all!
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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
What will Congress do in response to the Supreme Court's ruling? Speaker Boehner has already announced a vote on repeal during the week of July 9. Don't take anything for granted. Let your members of Congress know that you're not willing to give up what we just won.
Contact your members of Congress and tell them what you think. To find your Representative, go here; to find your Senator, go here.
Connecticut
The Connecticut General Assembly stubbornly refused to add consumer representatives to the Exchange Board. They did give Healthcare Advocate Vicki Veltri a vote, as she should have had already.
The Advisory Committees have been working hard on making a recommendation about the essential health benefits package. A vote by both Advisory Committees will take place next week.
Your State Last month, I told you that New York is trying to enact a Restroom Access law, that would allow people with IBD and ostomies to use restrooms in retail establishments. Well, Massachusetts also is considering similar legislation. Retailers are up in arms -- why not banks, government buildings, they say? If you care about this, you need to contact your legislator. Don't know who that is? Look here. 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. |
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Jennifer C. Jaff, Esq.  Executive Director
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