| 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.
New cover courtesy of Jesse Dylan -- thanks, Jesse!
|
Look What I Just Found!
The National Partnership for Women and Families, National Health Law Program, and Community Catalyst have established the Campaign for Better Care. This is a place where you can have input on how health reform is implemented. Remember -- the devil is in the details, so speak your piece and tell your story.
The Campaign for Better Care is a multi-year
initiative that will focus on improving health care quality, coordination and
communication for older patients with multiple health problems and their family
caregivers. One of the Campaign's key
goals is to build a consumer movement of and for older adults and individuals
with multiple chronic conditions to advocate for the comprehensive,
coordinated, patient- and family-centered care they need and deserve. Be a part
of it! Check out the new campaign
website at www.CampaignforBetterCare.org
to learn more about the campaign, its partners, and how to get involved.
|
Lybba is a website . . . an idea . . . a community. It is the vision of famed director Jesse Dylan. Although it is not yet up live for anybody to access, it aims to combine the world's medical knowledge with social networking, so that patients, medical experts, organizations -- everyone -- can come together to change the way health care is delivered. For now, Lybba is a growing community on Facebook that I hope you will visit. And Lybba's current website will give you a little more background about what it is and what it is meant to be. Sign up there for Lybba newsletters, too, which promise to be filled with wonderful information that Lybba collects from its many friends -- medicine, technology, innovation, support, friendship. Lybba.
|
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 on the Move!
The April 10: Wishlist Foundation GLOBAL Benefit for Advocacy for Patients was a HUGE success, raising enough to cover our operating expenses for about a month and a half -- that's help to about 250 patients who otherwise would have had nowhere to go. THANK YOU to everybody who gave, who came out, who organized a party or just attended one. Because of you, we are still on the move.
June 13: Get Your Guts in Gear closing ceremonies, Saratoga Springs.
November 13(tentative): Nashville CCFA.
Come say hello! |
It's Too Hard to Be Sick in America
Our newest 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.
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!
|
|
|
Taking the Politics Out of Health Care
Over the past year, the country got ripped apart -- Democrats in favor of reform, Republicans against reform, Tea Partiers MORE against reform, Public Option zealots MORE in favor of reform -- it has seemed, at times, almost like a verbal civil war. I write today to urge that now, when we're working on implementing the VERY complex, detailed system that will be put in place, we all stop the griping and get to work to make the plan that passed the best plan it can be.
Health care is not about politics. It never was and it never should be. It's about the people who call me and say they are living in a car and have no medicine. It's about the small business owner who has to stop covering her employees. It's about the young lung transplant patient who called saying she has no money for her anti-rejection medication any more. It's about life and death, plain and simple.
It's not about the size of government. As John Stewart said last week in his interview with Kenneth Blackwell (I'm paraphrasing), I think the limited government argument is usually limited to people, programs, and ideas with which you disagree, and which you want to be limited. The truth is that government has been part of health care since the advent of Social Security, Medicaid, and Medicare (not to mention health care to prisoners, federal employees, the military, etc.). Had the private sector played fair with health care -- had the insurance companies kept premiums at a reasonable rate, had doctors (not all, but at the very least, the fancy specialists who don't take insurance at all) kept rates reasonable, had pharmaceutical companies kept drugs affordable, this change wouldn't have happened because it wouldn't have been needed. We should not blame government for stepping in to save lives when the private sector had ample opportunity to do so and just dropped the ball completely. Indeed, I predict that the huge role retained by the private sector in the health reform bill will prove to be more of an obstacle to cost control than a boon to individual liberty.
And then there are the people who don't want to be required to have health insurance. What should we do when they end up in a hospital after a car accident or a sudden heart attack and they can't -- or don't want to -- pay their bill? Why should we as a society have to pay for their health care simply because they chose not to purchase insurance, even if they could afford it? No, everybody has to have insurance because EVERYBODY GETS SICK, right? Everybody. No exceptions. This isn't about transferring wealth from the rich to the poor; this is about everybody carrying their fair share of the burden. Why is that so hard to accept?
And then there are those who are against reform because they are afraid of change. I get that. I'm afraid, too. I know I have a so-called "Cadillac plan," and I know that won't exist after 2018, at the latest. I'm going to have to pay more out of pocket. How much more? How will I manage? Will I still be able to get all of my meds? I get it. It's scary. But life is full of scary things -- some we can see coming, like this, and some we can't even imagine. This is a fear we have to live with because it's the only alternative to the status quo, and I don't know many people who think the status quo is sustainable. So we have to take the plunge.
And that's where I come in, and a whole lot of other advocates whose job it is to help us all understand the changes and how they will affect us. You can go to the Kaiser Family Foundation, which has a TON of information on health reform. AARP has a special health reform question platform. Families USA has a new site called Health Reform Central that's set up to
answer your questions. And there will be plenty of other resources, including a help desk at the Department of Health and Human Services, or so promises Secretary Kathleen Sebelius (for now, visit the Health Reform website or a new White House feature, what health reform will mean to you). I promise, all of us will try to keep you informed. You can always follow my blog if you want frequent updates. Email me
questions at patient_advocate@sbcglobal.net.
We advocates all get that you're anxious. So are we. There are a lot of unknowns, a lot of details to be filled in. But we are equally determined to get this done and to do it right.
As of the start of the next plan year after September 23, 2010, your children can be on your policy to age 26, and three large insurers -- Wellpoint, Humana, and UnitedHealthcare -- are starting to implement that immediately, before September. As of June, there will be high risk pools for people with pre-existing conditions at premiums that are lower than many existing high risk pools. These are among two of the first changes you will see that will make a real difference in your lives. And so far, it's not all that complicated.
Don't let fear of the unknown sour you on a change that, in the end, will make us a better society -- a society that doesn't forget about those who are largely invisible. Those who die. Those who go bankrupt.
It's time to stop the political posturing. Instead of trying to figure out how to undo what has been done, pitch in to help with implementation. You will have opportunities to submit public comments to regulations, so do so. You will have opportunities to submit questions on the Health Reform website every Thursday afternoon, so do so. But don't you dare throw a brick or raise a hand or spit or use the 'n' word. Enough already.
Reform had to happen. It's now the law. Now, we have to figure out how to live with it, all of us, together, as a community. Come together over this and make it work better.
And for goodness sake, have a heart for the people who had nothing and now will have access to care. There but for the grace of whomever go we all.
|
World IBD Day
May 19, 2010 is World IBD Day. Five million people in the world have inflammatory bowel disease (including yours truly and a lot of our clients). So if you have IBD or know someone with IBD, take a minute on May 19 and think about all that it means to your or your loved one's life. For more information about World IBD Day activities, go here.
|
NEW IVIg Patient Resource Center Continues to Expand
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 informationabout IVIg; general information on how to write insurance appeals; and then specific information -- sample insurance appeals, medical journal article abstracts -- for specific diseases.
We now have posted materials pertaining to CIDP, multiple sclerosis, lupus, transverse myelitis, neuromyelitis optica, Guillain Barre syndrome, and pemphigus vulgaris. We will be adding more specific disease information soon, 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!
|
Free Webcast From the Children's Digestive Health and Nutrition Foundation
On June 3, 2010 at 8 pm. Dr. Wallace Crandall from Columbus Children's Hospital will be presenting a free webinar called Taking Your IBD Medications: Solutions from Children, Teens, Young Adults and Their Families. Dr. Crandall is wonderful, and all of the CDHNF's events are of the best quality. I strongly encourage families with kids with IBD to participate in this webinar. For more information, and to register, go here.
|
|
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. 701and 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. Although we are in an off-year, the legislature passed several health-related bills this session, although the Governor may or may not veto them. First, they passed a bill allowing municipalities to purchase prescription drugs through the state employee plan, creating a larger pool and thereby reducing the health insurance costs of municipalities. In addition, they extended COBRA to 30 weeks for unemployed workers. They also required insurers to publicly disclose their denial rates, and to inform them of the availability of assistance of the Office of the State Healthcare Advocate, Kevin Lembo, who is one of the State's greatest assets.
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.
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. |
|
|
Jennifer C. Jaff, Esq.
Executive Director
Advocacy for Patients with Chronic Illness, Inc.
| |
|
