| Know Your Rights Handbook |
 |
Want to be your own advocate? Learn how by ordering the Know Your Rights Handbook today. Click here for more information. |

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.
THANK YOU! |
Advocacy for Patients on the Move!
Great news! We have been invited to serve as a special patient representative to the FDA. We will have an opportunity to make recommendations to the FDA, and will participate in evaluations of new drug and device applications. Once we pass the background check and start to work, we will tell you more specifics.
Other Special Events:
March 12-14: Keynote speaker, Hemophilia Federation of America, Indianapolis
April 4: Speaker at the Crohn's & Colitis Foundation Educational Seminar in Chicago.
May 2: Speaker at the PSC Partners Seeking a Cure (primary sclerosing cholangitis) in Chicago.
June 12-14: Get Your Guts in Gear New York Ride
August 8: Speaker at the Crohn's & Colitis Foundation Educational Seminar in Nashville.
October 3: Keynote speaker at the Crohn's & Colitis Foundation Educational Seminar in Atlanta.
November 13-14: Keynote speaker at the Association of Pediatric Gastroenterology and Nutrition Nurses conference in Washington, DC.
Come say hello! |
|
NIH Study: We Need YOU! We are excited to report that, in partnership with the Center for Managing Chronic Disease at the University of Michigan, we have received a grant from the National Institutes of Health. The purpose of the study is to examine the challenges faced by the chronically ill, and ways in which interventions can be more effective in addressing those challenges. Our first step will be to prepare and send out a mailing to you that will describe the study in more detail, tell you what would be involved if you were to participate, and tell you how to let us know that you are willing to help. THIS IS YOUR CHANCE to tell the NIH what your struggles are like. If you haven't done so already, please send your mailing address to: patient_advocate2@sbcglobal.net to ensure that you will receive this mailing and have a chance to participate in this important study. Thank you!
|
|
|
|
It's the Economy, Stupid!
Those of you who were around during Bill Clinton's first term will remember this campaign slogan. Never has this slogan been more apropos than now. Every day, we get calls and emails from people who've lost their jobs and are trying to figure out how they are going to care for themselves. Some answers are suggested in our monthly column on health policy, The Chronicity Project, below.
But there are some other things you should know about that are downright scary. For example:
If you are on disability and eligible for Medicare and do not elect Medicare Part B because you already have commercial insurance through your job (some jobs leave you on the rolls as an active employee while out on disability) or a spouse, you can end up in some very hot water if you or your spouse is laid off. If you or your spouse is in a large group plan, as long as you or your spouse is an active employee, Medicare is secondary to your commercial insurance. But if you or your spouse no longer is an active employee, Medicare becomes primary, and your commercial insurance plan may require that you elect Medicare Part B. If you didn't elect Part B when you became eligible, you will pay penalties and perhaps have to wait for your Part B benefit to take effect when you enroll late. But here's the real rub: If your insurance policy says you have to elect Medicare Part B if you become eligible, they will process claims as if you had made this election even if you didn't, which means they will only cover, at best, 20% of your cost. Don't get caught like the patients I've worked with whose insurers went back two years to the date they were laid off and rescinded all of their payments above 20% because the insured could have elected Medicare and didn't, leaving the patient on the hook for the entire cost of his/her health care -- into the hundreds of thousands of dollars. Think carefully before you turn down Medicare Part B.
As health insurance companies tighten their belts, watch out for "step therapy." We have seen this trend growing. A Crohn's patient being required to try prednisone before the insurer will pay for any more expensive medications. A multiple sclerosis patient whose insurer gave her a list of meds to try before they would cover IVIg. If you can show that there's a reason why you shouldn't have to try the less expensive alternatives -- if you've tried them before, or if there are medical reasons why you can't try them, such as this MS patient, who couldn't try anything with potential side-effects to her liver because she has lesions on her liver -- you can fight with your insurance company and get them to continue to cover the prescription drug you've been taking. But you need medical records to show either that you've already tried what your insurer requires or that the other treatments are contra-indicated.
These and other practices will become more prevalent as insurers try to reduce their costs. Read your policy. Pay attention to mail you get from your insurance company. When you get bad or confusing news, call them and get an explanation of your recourse.
And, of course, call Advocacy for Patients if you need help.
As long as we're around, that is. The economy is hurting nonprofits terribly, as charitable donations take a nose-dive. If we've helped you and you want to make sure we're around the next time you need us, please use the "make a donation" button to the left and give. Even the smallest donations will help. If everybody who gets this newsletter gave $10, it would get us through a month!
Thanks. |
|
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
Congress passed SCHIP reauthorization and expansion, as we had hoped they would. SCHIP is the State Children's Health Insurance Program. It is funded by the federal and state governments. The reauthorization will allow SCHIP expansion beyond the limits set by the Bush Administration. Many thousands of children will have access to health insurance through this legislation.
The stimulus package isn't finalized yet, and it is in such a state of flux that whatever we say here may be wrong by the time we push the "send" button. As of the time of this writing, the stimulus still includes two health care benefits for the unemployed, although these are by no means sure things.
First, it still appears that the House and Senate are pushing for COBRA subsidies, through which the government will pay 65% of COBRA premiums for the unemployed for a period of time. In addition, there may be COBRA extension beyond the usual 18 months, as well.
Second, under the House version, there will be Medicaid coverage for people who are unemployed and were on Medicaid in the past. This does not appear to be in the Senate version.
It appears that neither the House nor the Senate version addresses the situation of employees whose employers go out of business and, thus, do not qualify for COBRA at all, subsidized or not. This is a huge gap, in our opinion.
One other provision has us worried. It's funding for what's called Comparative Effectiveness Research. It appears that the government is going to evaluate new, expensive medications to decide if they're really more effective -- or more effective enough -- than less expensive alternatives. If something is found not to be more effective than the alternatives, that assessment may lead to noncoverage by Medicare -- and you can bet the commercial insurers will follow suit. Some folks are saying it won't be used this way, but it sure looks this way on paper. Keep an eye on this.
Please take a moment and call or email your member of Congress to comment on these measures -- especially the need to provide some coverage for employees of businesses that fail since those employees will not have any access to COBRA or other health care coverage. You can find the contact information for your member of Congress here.
Connecticut
Connecticut Governor M. Jodi Rell has announced her state budget proposal. There are no new taxes; instead, the Governor proposes cutting several state agencies, including the Office of the Healthcare Advocate. This Office has helped literally thousands of people in Connecticut to get health insurance, keep health insurance, and get their insurance to cover medically necessary care. Cutting this essential service will greatly harm Connecticut's chronically ill citizens. In addition, this Office is funded by the insurance fund (i.e., money from insurance companies); not a dime of it comes from taxpayer dollars, so cutting this Office doesn't save the state any money. Clearly, the Governor's attempt to axe this wonderful agency is motivated by something other than fiscal responsibility. Call Governor Rell's Office at (860) 566-4840 and tell her not to cut this vital resource.
Representative Joseph Taborsak, who is on the Public Health Commitee, has introduced the Connecticut Restroom Access Act, Raised House Bill 6328. You can read the text of the Act here. The Act would make it a misdemeanor for a retailer to refuse to allow a patient with a digestive disease to use an employee restroom. Similar legislation already exists in Texas, Tennessee, Illinois, Minnesota, and Colorado. We testified in favor of this legislation on February 6, and have written to all of the members of the Public Health Commitee supporting this legislation, and we urge you to do the same. The contact information for members of the Committee is here.
Your State
We are located in Connecticut, and so we follow the Connecticut legislature fairly closely, and often testify before legislative committees. You can do the same in your state by reading your local newspapers and being in touch with your state legislators. One excellent way to monitor what is happening in your state is to subscribe to the Kaiser Family Foundation Daily Health Policy Report. But don't just read: ACT. Go to hearings and testify. Tell your story. Put a real face on the healthcare crisis.
How To Advocate In Your State
Whether you're in Connecticut or elsewhere, you need a strategy if you want to get legislation passed. Start with advocacy groups that have members, such as your state chapters of specific disease groups like the Crohn's & Colitis Foundation of America and the National Multiple Sclerosis Society. Write letters to the editor of your local newspaper. Track legsislation on your state legislature's website so you will know when hearings are scheduled and you can go testify. TELL YOUR STORY. My friend and director of the Center for Medicare Advocacy Judy Stein said it best: Stories make policy.
~~~~~
Please visit our new blog. Think about subscribing so you get a notice every time we post and then you can post your comments, as well.
|
|
|
Jennifer C. Jaff, Esq.
Executive Director Advocacy for Patients with Chronic Illness, Inc.
| |
|