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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!
There are a host of new websites that rank hospitals based on a variety of factors. The federal government website ranks hospitals nationwide. You can choose 3 and look at them side-by-side. You can also focus on a single surgical procedure. The Joint Commission -- the accreditation agency -- ranks hospitals, nursing homes, home care providers, and laboratories. And then there's a site that evaluates participating hospitals based on quality, safety and cost.
On a very different note, check out Dr. Larry Berkelhammer's blog. Dr. Berkelhammer is a psychophysiologist with multiple chronic conditions. He blogs about living with chronic illness. Like me, he's found that mindfulness practice is very helpful in coping and even treating our pain and fatigue. I'm just getting to know him and his work, but so far, I like what I see. Check it out!
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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
Summer's time for junky mysteries in my book. Once in awhile, I need a break from serious fare and read a bunch of fluff. Mostly, I read courtroom dramas. I enjoy Michael Connelly (the Lincoln Lawyer series is my favorite -- I just finished The Fifth Witness). I also liked Elmore Leonard's Be Cool. But my favorite series of all are Sue Grafton's alphabet books. I'm in the middle of V is for Vengeance and I'm loving it. Her female detective, Kinsey Millhone, is funny and smart and, well, female. Fun books indeed.
Do you read something special in the summer? 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
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:
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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What's Going to Happen?
So many people have asked me what's going to happen in the Supreme Court -- what if the Court strikes down the health reform law? Truthfully, I don't know. Nobody does. I think it's highly unlikely that the Court will strike down the whole law. If they're focused on the individual mandate, there's no reason they should invalidate the many provisions that have nothing to do with the individual mandate. The Court typically avoids striking down more of a law than is necessary. So if the Court works like it always has -- a big "if" -- then it's likely that most of the law will survive.
That brings us to the individual mandate. What I hope will not have gotten lost by the Court is the fact that, in states that have required insurers to cover people with pre-existing conditions, the only one to have succeeded in doing so without sending prices skyrocketing and really upsetting the market for individual insurance is Massachusetts, which did it with the individual mandate. If insurers have to cover sick people, that would mean greatly increased premiums -- unless they also add healthy people to the pool to spread the cost. That requires a mandate. I'm afraid that, if one goes, so does the other.
It breaks my heart, the stories I listen to every day, the people who are desperate, who can't get insurance because of a pre-existing condition, or who can't afford the only insurance they can get because premiums on "guaranteed issue" policies -- policies that have to be offered to anybody with a pre-existing condition -- are so incredibly high. According to one report, in Washington State alone, health reform would mean coverage for 328,000 people, and subsidies for 477,400 Washingtonians. Imagine the progress we would make nationally if health reform were to take full effect in 2014. Imagine the scope of the loss if the Supreme Court blocks implementation and Congress is unwilling to fill the void. Coverage of pre-existing conditions tied to an individual mandate and subsidies that help the middle class to afford good insurance was the best solution -- indeed, nobody's even tried to come up with an alternative, or if they have, they're not talking about it yet.
So what's going to happen?
A lot depends on you, on us. The challenge to the individual mandate is an argument based on states' rights. The argument is that the federal government doesn't have the power to tell people they have to buy insurance (or broccoli). People counter by asking what about the requirement that we all buy car insurance? The difference is that car insurance is mandated by the states, not by the federal government. Which means that, if the Supreme Court strikes down the individual mandate, the battle to restore it can and should happen at the state level. If that's what it's going to take for us to gain the right to buy insurance despite our pre-existing conditions, then that's what we have to do. Are you ready to fight for your right to be treated as an equal when it comes to buying health insurance? Are you ready to fight for a law that says you can't be turned down or charged more because of your illness?
Remember, half of all Americans have at least one chronic health condition. So if we all band together, state by state, we can make this happen. There are plenty of us to sway the politicians who need our votes. It absolutely, positively will not happen if you sit home watching TV and don't get involved. But if we all rise up, together, at once, and demand coverage of pre-existing conditions with an individual mandate and without charging us more because we are sick, it will happen. It's going to take us all, though. That means YOU!
Even if the Supreme Court upholds the law -- which they may do, and which they must do if they want us to believe they are neutral, above the politics, following precedent -- there's a lot of work to be done. By doing a lot of research before I go to meetings of the Exchange advisory committees, I've been able to ask questions that have clued in the other members of the committees into all of the additional information we need in order to make really important decisions. If you are in one of the many (most) states that have not moved towards creating an Exchange, now's your time to get involved. If we want to make sure the Exchange truly serves consumers as a marketplace where they can shop for and buy insurance, we may need to be part of that process. Write your Governor and offer to serve on a consumer advisory board. Contact your state legislators, as well. Let them know this matters to you. Ask to be part of it. If you succeed, I'll gladly help you figure out what's going on, what big choices need to be made, and how best to promote the rights of people with pre-existing conditions to accessible, affordable health care.
With so many of us needing health care, we have every reason to become leaders in our states and in our communities. This stuff isn't rocket science. There are lots of tools out there, from Families USA Health Reform Central to Community Catalyst to the host of health reform organizations all over the United States who are going to need to build an army of patients to take the fight to the next level, whether that's mandating coverage of pre-existing conditions or making sure the Exchanges really serve the consumers they are designed to protect. If all of us do whatever we can, we have a chance. If you sit home on your hands waiting for something to happen, I promise we will fail.
The question is not What's Going to Happen? The question is What Do WE Do Next? If this matters to you, that's the only question you need to answer.
Jennifer
P.S. - For immediate analysis of the Supreme Court's decision, follow our blog.
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Changing of the Guard
We've had a changing of the guard, as it were, at Advocacy for Patients. Our wonderful administrative assistant, Echo Kendall, gave birth to a beautiful boy named Urijah Tristan Johnson. She's going to be spending her time with him for awhile, which I think is great. Our staff attorney also took her leave -- I think, in part, because she couldn't imagine Advocacy for Patients without Echo.
We received over 100 resumes for each position and I interviewed a lot of talented people. In the end, I feel as though I found the best staff Advocacy for Patients could hope for.
Jillian Szymanski (on the left in the photo) is our new administrative assistant. She hails from New York, and is committed to the work we are doing here. While she's worked in offices before, she really wanted a job that had meaning -- and she feels that she's found it here at Advocacy for Patients. We are thrilled to have her.
Our new staff attorney is Brittany Cheree Allen (on the right in the photo). In her cover letter applying for this job, she said "there is no issue that I care more deeply about than advocacy for those with chronic illnesses." You see, Brittany was diagnosed with rheumatoid arthritis as a child, so she really "gets it." Despite her illness, she graduated with a dual degree from University of Nevada, Las Vegas (her home town) with two undergraduate degrees, and then attended University of Kentucky College of Law before moving to Connecticut and clerking at a Superior Court. Her immediate supervisor, Judge Lynda Munro, told me that Brittany was the best clerk she's ever had.
Both Jillian and Brittany were so excited about the prospect of working here that they got me reinvigorated. I'm thrilled to have them here -- a new team with fresh perspectives and a ton of energy. I can begin to see the future of Advocacy for Patients -- and that future is very bright.
Please join me in welcoming Jillian and Brittany. Starting next month, this space will be Brittany's Corner, so look forward to hearing from Brittany every month from here on in.
Jennifer
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Thanks 
In late March, Team McCready, a division of the Wishlist Foundation, did its thing to the tune of over $18,000 -- and there's still one more event on May 25 in Orlando, Florida. There were events in New York, Seattle, Los Angeles, Nebraska and the UK. These Pearl Jam fans sure do know how to throw a party -- and help our cause in the process.
Then came Flight to Mars, Mike McCready (of Pearl Jam)'s annual benefit for Advocacy for Patients and Camp Oasis, the CCFA summer camps for kids with IBD. This year, Mike played seven shows, from Santa Ana to San Diego to Vegas to LA, San Francisco, Portland and Seattle. And I hear a whisper that they may play the east coast next year! At every show, and in press Mike did all along the way, Mike talked about the good Advocacy for Patients is doing for people with chronic illnesses. He is remarkably generous to us, and we will never be able to thank him and his wife Ashley O'Connor enough for all they have done.
Last but not least, Dr. Ellen Scherl, Director of the Jill Roberts IBD Center at Weill-Cornell, made an extraordinary donation to Advocacy for Patients that is going to provide seed funding for an awesome new project we're planning -- details to come. Dr. Scherl not only keeps me going physically, but now she is stepping up to support our work on behalf of the community of IBD patients. We are so grateful.
Of course, we could not survive without the individual donations we get from people like you -- too many to name, but all equally essential to allowing us to continue to serve our mission of promoting and protecting the rights of people with chronic illnesses nationwide. Thanks to each and every one of you. 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
There won't be much done in Congress leading up to the election -- a lot of rhetoric but little action. Of course, we're all on edge about the Supreme Court decision, expected at the end of the month. But the GOP has finally acknowledged that there are some pieces of health reform -- coverage of kids to age 26, for example -- that have been very positive and that they would want to salvage. But the big "repeal and replace" line? There's no intent to replace. So what happens if health reform goes down? All I can tell you is that it won't be good for you and me.
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 legislative session ended without adding consumer seats to the Exchange Board, but there's still hope that this will be done during a "special session" to be held later. Once HHS issued final regulations on the Exchanges that require at least one consumer advocate on the Board of the Exchange, though, that meant that Connecticut is now out of compliance, so we have to add at least one. And we should be adding more than that. There's a special session of the General Assembly on June 12 (in honor of my birthday, no doubt), so hopefully, this will be addressed at that time.
The legislature did not move to create a Basic Health Program for people above Medicaid income levels but who would still have trouble buying commercial insurance, even with a subsidy. But the issue will be studied, so I guess that's a first step.
Meanwhile, the Exchange Advisory Committees are hard at work. Right now, the biggest issue is choosing the Essential Health Benefits package -- the blueprint for all insurance sold in the State from 2014 on. Instead of making a recommendation at the May meeting, we left the staff with a long list of questions that better reflect the magnitude of this decision. We have to choose from among several "benchmark" plans, which means we have to know what's included in -- and what's excluded from -- each of the benchmarks. Hopefully, we'll be getting that information soon so that we can begin weighing the options.
Your State Vermont passed H.559 . In the final, amended version on the bill, specialty tiers are mentioned but the language encompasses more that just these drugs. The language includes all prescription drugs and sets a beneficiaries out of pocket limit in line with the "lease amount necessary" meet the limits of Section 1302 of the Affordable Care Act and Section 223 of the IRS Code. This means, for example, that for employer sponsored plans the annual limit out-of-pocket limit for prescription drugs is $2,000/individual and $4,000/family. The out-of-pocket limit includes a co-payment, coinsurance, deductible, and other cost-sharing mechanisms.New York is considering a Restroom Access Bill, which would make employee restrooms in retail establishments available to people with Crohn's and colitis. Offered by Senator McDonald, New York would follow a bunch of other states -- Colorado, Connecticut, Illinois, Kentucky, Michigan, Minnesota, Ohio, Oregon, Tennessee, Texas, Wisconsin and Washington. About time. If you're in New York, contact your legislator. To find your state senator, go 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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