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TAKE THE NIH SURVEY!
Finally, it's ready! Take the survey here! Whether you are a patient or a caregiver, there's a version of the survey for YOU!
As you know, 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.
You can TAKE THE SURVEY NOW online, or you can take the survey over the phone if that would be easier for you.
If you want to take the survey by phone, please send your mailing address to: patient_advocate2@sbcglobal.net and we will mail you a packet of info, including consent forms. Thank you!
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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!
June 12-14: Get Your Guts in Gear New York Ride. I will be at closing ceremonies at Saratoga State Park on Sunday June 14.
August 8: Speaker at the Crohn's & Colitis Foundation Educational Seminar in Nashville.
September 15: Speaker at Crohn's & Colitis Foundation in Manhattan.
October 3: Keynote speaker at the IBD Educational Seminar in Atlanta.
October 26-27: Meeting for NIH grantees about our chronic illness survey and other similar projects.
November 13-14: Keynote speaker at the Association of Pediatric Gastroenterology and Nutrition Nurses conference in Washington, DC.
Come say hello! |
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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. |
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!
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The First Chronicallly Ill Justice
On May 26, 2009, President Obama nominated a Latina woman who would be the first acknowledged chronically ill Supreme Court Justice, U.S. Appeals Court Judge Sonia Sotomayor. Sure, Justice O'Connor and Justice Ginsberg have had cancer. And there may have been other Justices with chronic illnesses who never talked about them. But Judge Sotomayor has been very open about her diabetes. Think it doesn't matter? I disagree.
I already read one press account in which the question of Judge Sotomayor's longevity has been questioned, since her life expectancy may be shorter than a perfectly healthy person. Unless the healthy person gets run over by a truck, of course.
For me, this is not about politics. There seems to be some real question about where Judge Sotomayor stands on issues she hasn't had to rule on in her 17 years on the federal bench. For example, she hasn't ruled on an abortion rights case, and in her decisions on various types of discrimination, Judge Sotomayor has ruled AGAINST claims of race discrimination 80% of the time (according to the White House).
So I'm not arguing that she should be supported or not because she has a chronic illness or for any other reason. What I AM saying is that every time a prominent person comes out and says they have a chronic illness of any kind, the world gets a little more insight into what it's like to be chronically ill, and what we can accomplish despite our illnesses. It's why I talk about my Crohn's disease and gastroparesis. It's why I encourage you to tell your stories. The more chronic illness gets a human face, the less the stereotypes will dog our every move.
I leave my politics at the door when I represent Advocacy for Patients with Chronic Illness. But for me, it is not politics that makes me proud that we have a Supreme Court nominee with an acknowledged chronic illness. It is pride and hope -- pride that we now have yet another example of how patients with chronic illnesses can persevere to become whatever we decide to be, and hope that people who see a diabetes patient who's a federal judge will think before they question our ability as people with chronic illnesses.
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Me on Faith
No, not that kind of faith. Faith Middleton, our homegrown WNPR star here in Connecticut. I taped a half-hour segment that will air on Monday June 8, 2009 at 3 pm EST. It is rebroadcast at 10 pm the same day, and then it is archived on her
website. You can listen to it live on Connecticut NPR or anywhere in the world from Faith's website. Click the
"listen Live" link at the top right-hand corner of the page. |
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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
This week, Senator Edward Kennedy released a proposal for health care reform that is very similar to the Massachusetts model. There is a public plan option that will be available to people who can't get or afford commercial health insurance. In addition, his plan would raise the income level for Medicaid to 500% of the federal poverty level. As is the case with most other Democratic proposals that would be supported by the President, there is no pre-existing condition exclusion or limitation, and no lifetime maximum. While we have not had time to study this plan in detail, we think it is an effort that is worth that study, and hope that you will read both the supporters and the detractors carefully and decide whether this plan will meet the needs of the chronically ill.
The Senate Finance Committee issued its proposals for health care reform. They are a mix of public and private options. In our opinion, they place too much of an emphasis on Medicare as a model; a 20% copay for the chronically ill is unaffordable. Advocacy for Patients submitted detailed comments which you can read here.
In addition, the proposals to pay for health care reform include a very strong possibility of a tax on the value of health insurance that is given to employees as a workplace benefit. For example, our insurance costs $1000 per month. I could have to pay tax on $12,000 in additional income despite the fact that I don't get this income; what I get is health insurance. Hopefully, there will be income limits on any such tax, at the very least. But what I'm hearing is that the tax will kick in if you receive a plan worth over a certain dollar amount. So the better your insurance, the more likely you will pay a tax. I'm having trouble with this one, although I understand that we all have to make sacrifices.
Now's the time to call or email your member of Congress to comment on these measures. At the very least, tell your story and explain why we need universal, affordable, portable, comprehensive health care NOW.
You can find the contact information for your member of Congress here.
Connecticut
The Universal Health Care Foundation's SustiNet proposal, RB 6600, was passed by the General Assembly. We expect the Governor to veto it, and there may well be an effort to override her veto, so this one's not over by a long shot. It's important that I explain that my support for SustiNet is not a knee-jerk reaction in favor of all universal health care. SustiNet contains the most thoughtful chronic disease managment proposal I have ever seen, including involving patients in developing care management plans, and ensuring that chronic disease management not stop at the door to the medical office, but extends to work, school, and home life as well. This is why I support SustiNet so strongly.
In other exciting news, the Connecticut Restroom Access Act, RB 6328, was passed by the General Assembly. We now wait to see if Governor Rell will sign it. It is CRITICALLY IMPORTANT that people contact the Governor's Office and ask her to sign this legislation. The Bill has passed with bipartisan support, and there's no reason to think the Governor will veto it. If you are with me in wanting universal health care and/or needing a bathroom NOW, please contact the Governor and ask her to sign these Bills. If she signs them, please remember to thank her. If she vetoes either one, please contact your State Senator or Representative and ask them to make sure these bills are enacted.
Your State
So many of you ask me what you can do. 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 Family Foundation Daily Health Policy Report, 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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