| 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.
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Look What I Just Found!
A group of doctors, nurses, and other providers have set up a website, Healthcareandyou.org, which answers questions about health reform on a state-by-state basis, no politics or opinion -- just information. It's a great resource. Check it out.
And here's your bonus pick for the month, Treatment Diaries. This is a social networking site for people with chronic illnesses. If you need support or to talk or just feel less alone . . . check it out.
Jennifer
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What I'm Reading
Before I start introducing you to new books that resonate with me about chronic illness, I thought I'd introduce you to some of my old favorites. So here are the first three:
The most important book I've ever read is Gloria Steinem's Revolution From Within. It taught me how to see myself as I choose to see myself rather than through other people's eyes. Gloria is an amazing writer and thinker; without doubt, the smartest person I've ever met. She leaves it all on the page in this one.
Thich Nhat Hanh's Peace is Every Step is a beautiful book of short, Buddhist essays that you don't have to be a Buddhist to love. On days when I get it right, the wisdom from this book leads me to . . . well, peacefulness. Keep it next to your bed and read one essay a night. Sweet dreams.
Pema Chodron's When Things Fall Apart also stems from the Buddhist tradition, although it's a bit more Americanized. I found it when I was at the lowest of the low points in my life, when I was dying and nobody knew why and I was afraid and alone and could not make sense of anything. It helped bring order to the chaos -- or perhaps better said, it helped make the chaos tolerable.
Jennifer
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Get Your Guts In Gear
Advocacy for Patients is a beneficiary of Get Your Guts in Gear's 2010 Rides, and hopes to be a beneficiary of the 2011 Rides, as well. 2011 Ride dates have not yet been determined, but check back here for more information. 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!
April 8, 2011: Mike McCready's Flight to Mars benefit for Advocacy for Patients
May 4, 2011: G-PACT webinar
November 6, 2011: CCFA Long Island.
Can we do a webinar for your organization? Contact Jennifer and we'll be happy to accommodate your request.!
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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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Health Reform One Year In
One year ago -- March 23, 2010, to be exact -- I watched on TV with tears streaming down my face while President Obama signed the Patient Protection and Affordable Care Act, otherwise known as health reform. It was, in my view, the most important thing any government official has done in my adult lifetime. For years, I had watched the status quo create a two-class system of health care: those of us who could get insurance because we were healthy and didn't really need it, and those of us with pre-existing conditions, who knew that, if we lost our insurance and couldn't get a job with a group plan as part of the deal, we were in big trouble. That day, as Barack Obama signed one letter at a time so he'd have a lot of signing pens to give away, I felt that, for the first time, I had a chance -- we had a chance -- at true equality.
Changing the world takes time, though, and because health reform implementation takes a fair amount of planning, everybody hasn't seen all it will be just yet. That has created a vacuum for the lies and demagoguery that have left many people flat-out hating health reform, and others simply afraid. As I've said before,
- Health reform is not a government take-over of health care. It's regulation of the insurance industry and "self-funded" insurance plans, which has always been regulated by the states and federal government.
- There is no such thing as death panels. Period. They don't exist.
- There's no federal funding for abortion.
- There's no free care for illegal immigrants.
- Funding wasn't "hidden" in the bill; the Congressional Budget Office published report after report explaining where the money was going to be spent.
I could go on, but you've been reading these newsletters long enough to know that the deliberate falsehoods that have been fed to an American public that is generally afraid of change -- aren't we all to some extent? -- get me seriously worked up. So moving right along ....
Health reform has already done some real good. Some of you reading this called me looking for insurance and I told you about the new Pre-existing Condition Insurance Plan, which is affordable in many states, and which covers people with pre-existing conditions who haven't been able to get insurance on the open market. Some of you called because you couldn't get insurance for your chronically ill child, and I told you that there are no more pre-existing condition exclusions for kids under age 19. Some of you aged out of your parent's policy at age 19 or so, only to learn that you now had the right to re-enroll and stay on their plan to age 26. Some of you were bumping up against lifetime limits and annual limits, and health reform eliminated and began to phase them out. Time and time again, we have had options to offer you that did not exist before health reform was passed.
There's way more to come, too. The new appeals procedures will kick in this year, which will make it easier for us to argue on your behalf when an insurer denies coverage of a treatment your doctor says you need. The Medicare Part D "doughnut hole" will begin to be phased out. And insurance companies will have to spend 80 or 85 percent of every premium dollar on services that contribute to our health -- capping things like salaries, bonuses, and other administrative costs, and hopefully beginning to control premium rate increases.
And if we hang in long enough -- if we fight back against those who advocate repeal until reform fully kicks in -- there will be NO MORE PRE-EXISTING CONDITION EXCLUSIONS EVER! Finally, those of us with pre-existing conditions will not be second-class citizens in the insurance world any more. The elimination of pre-existing condition limitations is nothing short of insurance equality for the chronically ill. Today, we are second class citizens for insurance purposes; health reform changes that in 2014.
And there's more. The states will set up Exchanges or marketplaces that allow us to comparison shop for health insurance like we shop for everything else. There will be subsidies for people who can't afford insurance. Small businesses will be better able to afford to cover their employees.
Is it perfect? No. That's like asking whether Medicare or Social Security was perfect on day one. They were not; they have been adjusted over the years, just like we will have to make adjustments to health reform. That is to be expected. That doesn't mean we should throw in the towel before we even see how reform plays out.
And remember, primarily this was health insurance reform, not health care reform. We still have a long way to go to bring down the cost of health care in America. Health reform takes some good first steps by encouraging patient-centered medical homes and accountable care organizations that will coordinate our care better, eliminating duplicative tests and treatments, promoting patient safety, reducing hospital readmissions and hospital acquired infections. But I'm not sure we know all of the answers about how to deal with ever-increasing health care costs just yet. What I do know, in my heart and in my head, is that regulating the insurance industry better, smarter, stronger is a good thing for those of us with chronic illnesses.
For me, this was never about politics. This is about civil rights, equality. If we could take the politics out of it, I'd bet most of you would agree. If we could take the lies out of it, you'd get it. If we can guard against repeal, all of us will be equal in the eyes of insurers some day. We shall overcome!
Jennifer
Read my oped on health reform, my essay on why health reform is a civil rights issue, and stories, stories, stories and more stories about the good health reform has done. And watch a video of what health reform means to me.
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Welcome Home, Nicole
When I started Advocacy for Patients in March 2005 (yup, six years ago), I was alone in my home, me and Emily (our feline mascot) doing the best I could to help a few people here and there while still having to make a living doing some legal work "on the side." Eighteen months later, I was able to pay myself a salary. Another eighteen months later, I hired my first assistant, Celeste, who has since given birth to my girl Amieta and moved on to life in Vermont. Her sister Echo took her place.
In the midst of all that, Nicole Netkin-Collins was going to law school. She interned with us the summer of her first year in law school, 2008. I'm no fool; I was never letting her go!
Over the years, when Nicole had time, she worked here part-time. She's gotten as good at writing insurance appeals as I am.
So when it came time for her to graduate in December, I had to take the plunge. I don't know how I'm going to raise that much more money every year, but if I fail, it's going to be for a great reason: Nicole Netkin-Collins is now Advocacy for Patients' first staff attorney!
Nicole was a Students International missionary in the Dominican Republic in 2003, helping at a special education school that served the academic, physical and spiritual needs of Spanish-speaking students. While an undergrad at University of Connecticut, she was an academic coordinator for the NAACP, planning and coordinating an HIV/AIDS forum for interested students on campus. She worked as an assistant canvass director during the summer of 2005 for the Connecticut Citizen Action Group -- one of the most important grass-roots political forces in the State of Connecticut. And she was an organizer for the New England Healthcare Employees SEIU-1199 in 2006-2007.
All of that might lead you to believe that Nicole is a fist-pumping political activist. She's light on the fist-pumping -- more so than I, I think -- and heavy on brains. Nicole is really smart. She has her own relationship with chronic illness (who doesn't?), but even if she didn't, she's such a compassionate person that she'd "get it" anyway.
If you are so inclined, you can welcome her by emailing her here. And if you call and Nicole answers the phone, don't worry -- you're in wonderful hands.
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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
The big news is still the budget. Since our last newsletter, the Senate voted down the House GOP proposal AND voted against the Senate Democratic alternative, too. Back to the drawing board. The latest three week extension runs to April 8. Hopefully, Congress will reach an agreement by then, although this morning, there's talk about extending talks another week, while funding the Pentagon through the end of the fiscal year (September). The parties are also preparing for a shut-down if an agreement cannot be reached.
This situation is changing from one minute to the next. If you want to stay up to date on the articles from the major newspapers, you can follow my blog or our Facebook page. I read and link to all the major papers every morning before 7 am, so if you want all your information quickly and in one place, we've got you covered.
Health reform is going to figure into whatever happens -- it certainly has figured into the negotiations. There are several conservative GOPers who voted against even the three week extension because it did not defund health reform and Planned Parenthood. The Democrats in the Senate won't go for defunding either of those. The stalemate in the Senate, which could not pass either a GOP or a Democratic budget so far, is going to be tough to break. Every vote counts. So, you know what to do ..............
Contact your members of Congress and tell them what you think. To find your Representative, go here; to find your Senator, go here.
Connecticut We've submitted a lot of written testimony this year, but our big push was over a Bill that was designed to bring state law into compliance with the new federal rules governing health insurance appeals. The first draft was somewhat problematic (I say kindly). Because our legislature doesn't really take enough time to think these things through, we had 2 business days from the day we learned about the Bill to the day of the hearing. On day one, we wrote 12 pages of comments that we sent to everybody on the Insurance and Real Estate Committee. Our Acting Health Care Advocate, Vicki Veltri, then took the ball and ran with it, making sure the drafters knew that they'd made some big mistakes. Although we haven't yet seen another draft, we've been told it's in the works. So we made good progress on an issue about which we know a whole lot.
In other positive news, SustiNet -- Connecticut's version of the "public option" piece of health reform -- has been passed by all three Committees of cognizance, and now will go to the full legislature. However, the fiscal note that came out looks like it's very expensive, although the drafters of the plan say this didn't take federal funding into consideration adequately.
And the paid sick days bill, which would require employers to allow all employees to accrue up to 40 hours per year of paid sick leave, also passed committee and has a good chance of passage.
As always, it's always good to contact your State Senator or Representative and tell them how you feel about things. Your State
Courtesy of G-Pact, the Arkansas House of Representatives has passed a bill that would require insurers to cover gastric electrical stimulation for gastroparesis. If you are a GI motility patient in Arkansas, contact your legislators NOW.
Courtesy of the Neuropathy Action Foundation, attempting to reduce costs, insurers increasingly are using specialty tiers to pass on the cost of expensive prescription drugs. States are beginning to respond. New York passed a law prohibiting insurers from creating specialty tiers on October 1, 2010. Similar legislation is pending in CA, AZ, NE, FL, MD, HI, WA, OR, AK, NM. Many other states are looking at doing the same. If you are having problems with a specialty tier and would like to help by telling your story, let me know and I'll try to put you in touch with the right people, or contact the Neuropathy Action Foundation here. 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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