Look What I Just Found!
The Lybba splash page us UP. 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.
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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.
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Advocacy for Patients on the Move!
April 10: Wishlist Foundation GLOBAL Benefit for Advocacy for Patients -- see their website for details. We'll be in Hartford celebrating our FIFTH BIRTHDAY! April 25: Dystonia support group at U. Conn. Health Center, faculty lounge off the cafeteria. June 13: Get Your Guts in Gear closing ceremonies, Saratoga Springs. November 13 (tentative): Nashville CCFA.
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.
New cover courtesy of Jesse Dylan -- thanks, Jesse!
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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.
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 Connecticut. Nevertheless, generous donors from many states make unsolicited donations for which we are very grateful.
THANK YOU!
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Health Reform Passes
For a year, I've been trying to keep you up to date on health reform, sharing my views at times, but always trying to keep you informed. So it seems only fitting that I note the passage of the bill, even though you all know it already.
In the coming months and years, there will be many questions about how the bill will impact your lives. I am committed to being here as a resource to help you through these changes. I understand that you are apprehensive -- change can be scary -- but hopefully I will be able to help you to make the best of health reform for you, your family, your community. Check my blog in between newsletters for updates.
To those of you who called your members of Congress, who spoke up, who helped make this happen, THANK YOU!
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It's My . . . er . . . OUR Party
Five years ago, I never thought about the long-term and whether I would be doing this work for awhile. Truth be told, I wanted to be a judge, and this was supposed to be a way station. Well, I still want to be a judge, but since that doesn't seem to be happening, I've come to think of Advocacy for Patients as the job from which I will retire.
In five years, we've worked with well over 3000 patients (over 5000 cases, but so many of you come back to us for repeat work!!!). We've raised almost $1 million and given away over $5 million in free legal services. Not bad for a sick old lady, eh?
In case you didn't already get the message, the Pearl Jam fan-based Wishlist Foundation is throwing parties to celebrate our five years in business, and to help raise some money to keep us in business for another five years. Here are the locations. Join us:
Hartford, ConnecticutBlack Bear Saloon (near the train station).187 Allyn StreetHartford, Ct 06103 Time: 3 pm - 6 pm$5 cover chargeAsbury Park, New JerseyThe Stone Pony- Asbury Park, NJTime: 4:00pm -Close
Tickets: $15.00Chicago, IllinoisLocation: THE ASHLAND
2824 N. Ashland BlvdTime: 6 pm to wheneverLive Pearl Jam cover bandBoston, MassachusettsLocation: HARPERS FERRY158 Brighton Ave. Allston, Ma.Time: 8 pm18 and over with Backseat Lover (PJ tribute band)Council Bluffs, IowaTime: 7:00pm Location: Whiskey Roadhouse Inside of Horseshoe Casino 2701 23rd AvenueCouncil Bluffs IA 51501 with Ten Club (PJ Tribute band)Private Viewing of PEARL JAM'S IMAGINE IN CORNICE (ITALIA 2006 Directed by Danny Clinch 7:00pm - 8:00pm)HAWAII CHAPTER
Hosts- Jamie Jasina/Emily Oandasan
Location: Bar 35
35 N. Hotel Street
Chinatown Area, HonoluluTime: 6-11 pm in the Back Patio Area
Cover paid at the back $10
Door Prizes
T-shirts for sale
Happy Hour 6-10 $3 Skyy cocktails, $4 select beersLeeds, EnglandEntry Fee: £5.00
Location: The Fenton, Woodhouse Lane- Leeds
The event is due to start at 7:30
1st band - El Caminio on stage 8:00 - 8:45
Fundraising Auction - 8:45 - 9:15
Pearl Jammed 9:30 - CloseSeattle, WashingtonEasy Street Records 4559 California Avenue #22 Seattle, WA Special musical guest: Jodie Watts Details to be announced Miami, Florida8 oz Burger 1080 Alton Blvd Miami Beach, FL 33139 Pearl Jam Tribute Band 8 pm Suggested donation $10.00 Pearl Jam Cover Band and Contest Los Angeles, CABrennan's Pub Marina Del Rey, CA 90292 4 pm - 9 pm Cover band: Vitalogy Tickets $15
For more information and constant updates, see the Wishlist Foundation or follow the Team McCready Global Fundraiser on Facebook.
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NEW IVIg Patient Resource Center
Intravenous immune globulin (IVIg) is a blood product that is FDA approved to treat several illnesses, but that often is used "off-label," to treat illnesses for which it is not FDA approved, but for which it is very effective. Because these uses are off-label, insurers often deny coverage. That's where we come in. Advocacy for Patients has had good success in getting IVIg covered for multiple sclerosis, lupus, transverse myelitis, and other illnesses.
Since there are more patients than there are staff at Advocacy for Patients, we decided to create a resource where patients can go and learn to write their own insurance appeals for IVIg. There is general information about IVIg; general information on how to write insurance appeals; and then specific information -- sample insurance appeals, medical journal article abstracts -- for specific diseases. We will be adding more specific disease information over the next year or so, so keep checking back,and if you have a need that isn't being met, let us know and we'll move your disease up on the "to do" list and try to get you help as quickly as we can.
Patients can write their own insurance appeals if only they are given the tools. So here you go!
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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
Other than health care reform, this is important:
IVIg: 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.
Bleeding disorders: On March 15, 2010, Congresswoman Carolyn
McCarthy introduced H.R. 4846 entitled The Bleeding Disorders Screening,
Awareness, and Further Education Act of 2010."
If passed the bill will:
- Increase research funding for all bleeding disorders
- Provide greater physician and public education on bleeding disorders
- Screen college students for von Willebrands (vWD) at institutions of
higher education
- Enhance diagnosis rates and treatment of bleeding disorders
- Decrease the number of unnecessary hysterectomies performed each
year due to undiagnosed cases of vWD.
Each aspect of this measure is important to the bleeding disorders
community. Education and awareness of bleeding disorders has the
potential for earlier diagnosis, which can lead to quality care and
better health outcomes. Furthermore, additional screening mechanisms,
increased funding for research and a research plan can positively impact
the lives of those who remain undiagnosed.
Lift your voice and be heard.
To find your Representative, go here; to find your Senator, go here.
Connecticut
The Connecticut legislative session has begun. It's a short session and most of the focus will be on the budget. If you have an opinion about how budget cuts can and should be made, or new revenue raised, contact your members.
Here are a few items of interest:
HR 5303 An Act Requiring Reporting of Certain Health Insurance Claims Data - would require managed care organizations to report claim denials to Insurance Department. SB 194: - Eliminates Insurance Department's ability to simply allow premium rate hikes to take effect without a public hearing.
- Requires insurers to notify policyholders of requests for rate increases and the date, place, and time of the public hearing.
- Limits reasons for rate increase, puts burden of proving that increase is "reasonable" on insurer.
- Empowers Attorney General and state Healthcare Advocate to intervene in rate cases and appeal rate decisions to Superior Court
SB 5235: An Act Concerning Evidennce of Noncoverage of Health Insurance - requires insurance companies to notify consumers in writing that a claim has been denied, include the relevant provision of the insurance policy, and instruct the consumer to contact the Office of the Healthcare Advocate for assistance with an appeal. HB 5219: An Act Extending State Continuation of Health Insurance Coverage - extends COBRA coverage from 18 months to 30 months so that laid off employees can keep their coverage for a longer period, at the lower group rate, as they look for new jobs. As always, it's always good to contact your State Senator or Representative and tell them how you feel about things.
Your State
Restroom Access Bills: Patients in New York and Wisconsin are making headway. Check with your local Crohn's & Colitis Foundation chapter for more information on how you can get involved.
California (AB 2170) and Florida (SB 516 and HB 275) are following Nebraska's lead in introducing legislation that does not allow changing prescription drug coverage in the middle of a plan year. Also in California, AB 2170 -- copay/coinsurance limit bill sponsored by the MS Society will be heard on April 6 at 1:30. Turn out in force.
Hawaii SB 2494 requires health insurers to offer at least the same drug coverage to the insured that the insured had under the insured's previous policy with a different insurer or like entity. In other words, the bill will provide for continuity of drug coverage when a patient either switches plans or renews their existing plans. More info at the Alliance for Plasma Therapy. What's happening in your state? Shoot me an email and I'll add it to our next newsletter. 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
Advocacy for Patients with Chronic Illness, Inc.
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