| 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.
|
Look What I Just Found!
The Center on Medical Records Rights and Privileges, a project of Georgetown University Health Policy Institute, is a great source for information about how to get your own medical records, including how much a provide is allowed to charge you, how quickly they have to respond to your request, and how to actually make the request. Just click on your state and all will be revealed. What a great resource -- bookmark this!
Jennifer
|
What I'm Reading
The Craggy Hole in My Heart and the Cat Who Fixed It is not a book about illness, but it might as well be. And although it's written by Geneen Roth, the famed weight-loss guru, it's also not about weight loss. It's about the holes in our hearts that are torn open in childhood that we carry around with us all our lives unless we do a whole lot of really hard work with a really good therapist, or unless we allow something -- here, the perfect cat -- to begin to fill that hole and make it hurt less and less each day.
If you know me at all, you know that my Emily has been the best companion a girl could ever dream of. The older she gets, the more afraid I am that I will outlive her. That's because she's helped me to feel loved in a way I'd never been loved before -- for so little in exchange, she comes when I call her, she purrs just because she's sitting next to me, she climbs on my lap while I'm working, sometimes without me noticing until I realize she's there.
Geneen Roth had a husband, but this was a hole that he could not fill. Only her special cat could do so.
Do you have a pet? Does he or she help you live with your illness? The best thing my shrink ever did for me was make me get a cat.
This book is a gem that will take you a day to read, but will stay in your heart long after it's finished. Enjoy!
Jennifer
|
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 are June 10-12 (New York); August 5-7 (Northwest); and September 16-18 (Midwest). To learn more about Get Your Guts in Gear, see their website for details or call 866-9IGOTGUTS (866-944-6848).
|
| Advocacy for Patients on the Move!
June 16, 2011: Jill Roberts IBD Center support group
September 18, 2011: CCFA Manhattan
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.!
|
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.
|
|
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!
|
|
|
|
We Have To Change The World
Those of you who follow my blog and our Facebook page already know that the past month has been tough for me. Actually, several months. We lost an insurance appeal that really was about life and death, and the reasoning was so perverse and so wrong -- it was devastating and made me wonder why I'm working this hard when the people who make decisions (or at least some of them) sometimes don't even read what we send them, and often just don't care. At all. The patient in that case is a lovely young woman who deserves the chance to have a decent life, and a couple of bureaucrats who seem pretty heartless are in the way. And they win, because they can. It's just so wrong.
Add to that the increasing number of calls and emails we're getting from people who've lost jobs and houses and insurance and are desperately ill. And due to budget cuts on both the state and federal levels, there are fewer resources for people in need. Again, it's just so wrong.
And then the World Health Organization released a report stating that chronic illness is now the leading cause of death both in the US and the world. This important information was published in the LA Times, and then two days later, in the Washington Post, but it was never even carried in the rest of the mainstream media. We are suffering -- and we are invisible.
The thirteen year old boy whose school referred him to truancy court rather than providing him with accommodations for his ulcerative colitis. The thirty year old woman who's had two strokes and is having trouble navigating the Medicaid system, but we can't find anybody in her state to help her. The man with dystonia who lost his health insurance and will become totally disabled -- at taxpayers' expense -- if he can't get care.
This is the world of the chronically ill. It has to change.
My desperation to do something -- anything -- to find help for people who are broke and sick has led me to drastic thinking. I considered going on a well-publicized hunger strike for 30 days to illustrate the desperation that is felt by people with chronic illnesses who cannot access health care due to cost or unreasonable insurers or whatever other unfairness they are facing, but I realized that I'm too sick to play that kind of game with my health.
But I am desperate, and you should be, too. All of us are one job, one illness, one setback away from being the people who call here for help. The 30 year old man with chronic inflammatory demyelinating polyneuropathy who earns $200 per week, can't afford health insurance, can't afford medical care -- and will become totally disabled without that care. The 50 year old divorcee who lives in public housing that stinks, alone, without money or a car or friends or even a reliable telephone.
Indeed, if Advocacy for Patients failed -- which not only could happen, but will happen over the next couple of years if we don't discover reliable ways to fund our necessary growth -- I would have no health insurance and no job. With my pre-existing conditions, I would have one and only one insurance option, at least in Connecticut. And it's not a good option, either. I would either stop taking some of the medication that's keeping things in check, which means I would get sicker, or I would spend all of my savings on pharmaceuticals. Eventually, I would lose my house and everything I have worked for so hard. It can happen to any of us. Indeed, it does.
I talk to people who are totally isolated. Because they often don't look sick, family and friends don't "get it" and they abandon them, leaving them alone, depressed, hopeless. They are in pain; some in so much pain that they cannot get out of bed or our of their homes. The uninsured 50 year old man in a rural area living out of a motel, bleeding from his rectum, who is sent away from the ER with pain meds and only pain meds, without a diagnosis or treatment for what's making him bleed. The west coast woman whose pain management doctor simply up and left the state, leaving her not only without a doctor, but without medical records or any proof of her treatment regimen, who can't get medication because doctors think she's drug-seeking. The mom who had to leave her son behind and go to detox and then rehab after her doctor abruptly cut her off from pain meds for no reason whatsoever.
I can't stand the thought of what people have to go through when the only thing they did wrong was get sick. The thought of these folks who are alone, ashamed of being broke, who can't get medical care, can't work because they are sick, can't get disability because they don't have medical records because they couldn't afford to go to a doctor. I just can't stand it. As I write this, tears come because this is so incredibly painful.
This is not the kind of world I want to live in. We owe it to each other -- to every human being -- to care. If you aren't as upset as I am, you should be. I could be talking about you. You think that couldn't happen? Well, unless you're very wealthy (in which case I'd love to talk to you about a wonderful organization that could use your support), it could be you, and it could happen fast. Most of the people I talk to worked all their lives. They had insurance. They had friends and family. They had spouses. And then they got sick -- really sick -- and slowly but surely, they lost everything. Everything, including the spouse and friends and family, who get tired of sitting around, or of hearing the complaints, or who just don't get how hard it is to sit up in a chair when you're so tired you could cry and so in pain that you can't stand being awake.
I have this image in my head of people living in shadows, people with invisible illnesses who themselves become invisible as they fade out of the workplace and their social lives, slowly becoming hermits who never intended to be alone, afraid of losing what little piece of a real life they have left. And then they get the foreclosure notice or eviction notice, and they have nothing. Except a disease that they can't afford to treat. They do live in shadows. They are terrified. They are ashamed. And they are alone. And I know that I am one loss away from being them.
So what can we do? Well, first of all, the more we talk about our own invisible illnesses, the more we make invisible illness okay to talk about. We help people step out of the shadows to a place where they can feel free to tell their story, ask for help, maybe start over again. If we tell our stories, we make it okay for others to do the same.
I'm collecting stories, some of which I plan to include in what I hope will be another book. If you have a story you're willing to share with me, write me, call me, email me and we'll gladly add your story to the mix for possible publication (without names, of course). We also get lots of press calls looking for patients who are willing to talk about their experience with insurance and other aspects of living with chronic illness. Are you willing to go public? Let me know if you are and we'll note that on our database. You can be part of the Advocacy for Patients speakers bureau.
Second, contact your state and federal legislators and tell them the toll chronic illness has taken on your life, your child's life, your spouse's life, your friend's life. The more we educate the people who make policy, the better policy they will make. To find your state legislators, search for "[name of state] legislature" and then find yours by inputting your address. To find your federal Senator, go here. To find your federal Representative, go here.
Third, talk to your doctor about ways he or she might help by setting up a free clinic day once every three months, or agreeing to do a colonoscopy for free once a month. If he or she is willing, let me know. I will compile a referral list and I will refer patients to the right doctors.
But most of all, when you're walking around and you see people huddled in doorways, or when you're in the emergency room and you see people being sent away, speak up. Help. Even if all you can do is be supportive and sympathetic, it will make a huge difference to them. I get lots of calls and emails from people I can't help a whole lot. But taking the time to talk with them, having a heart -- it makes a huge difference. If they need free medication, send them to www.needymeds.org for instructions on how to apply. If they need a free or low cost clinic, send them here to input their address to find the clinics near them (or do it for them if they don't have a computer). If they need a small one-time cash grant, send them to our friends at Modest Needs, who may be able to help. And if you don't know the answer but they sound like they really need help, tell them how to reach us at Advocacy for Patients.
And always, always keep in mind that he or she could be you. It's more a question of luck than anything else. So be thankful that you have a job and a home and insurance and a family and friends. Never take them for granted. Those of us who are not alone in the world are very, very lucky. We owe it to ourselves to give something -- even if just some time, some conversation -- to those who are less fortunate.
Three thousand people get this newsletter. If each one of you reaches out to one person, that's a new day, new hope, to 3000 people with chronic illness. Tell me we can't change the world. Really? Because I say we can, we must -- and we will. Jennifer |
|
Moving
Advocacy for Patients is finally making the move from my house to commercial offices. Our target date is September 1. And folks, we need everything -- computers, furniture, phones -- everything. Can you help with a donation? Use the "donate" button just to the lower left of this article or check out our fundraiser on Crowdrise. Any and all help is much appreciated.
But if you can't give money, perhaps you can help decorate. We would like to display original artwork from our clients on the walls of our new offices. Do you draw, paint, needlepoint? We'd be honored to display your work, especially as it depicts how you feel about Advocacy for Patients. Children's art is welcome.
Help us make our new home a real home. The move isn't until September 1, so you have plenty of time to work on your submission. And once you're finished, when people ask what we do, we will just tell them to look at our walls. You will be right there with us. 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
Well, they're still at it. The GOP won't raise the debt ceiling without massive cuts to the deficit. The Dems say the failure to raise the debt ceiling would cause us to default on our obligations, which could destabilize an already fragile world economy. The GOP refuses to talk about raising taxes, even on the richest Americans, even by eliminating tax breaks for oil companies. The Dems say they agree that the deficit has to be cut, but revenue enhancements like ending breaks for big oil should be part of the plan. And Medicare continues to rest at the center of it all, with the GOP proposing to gut it and instead provide people with insurance vouchers to buy their own insurance (which will cost more than the vouchers, especially if you consider deductibles, copays and coinsurance), and the Dems determined to, in President Obama's words, try to fix it with a "scalpel rather than a machete."
One good note. The Department of Health and Human Services issued final rate review regulations that will require insurers to publicly justify -- in plain language -- any premium rate increase over 10 percent. For an explanation of how the new rate review rules will work, check out this excellent summary.
Contact your members of Congress and tell them what you think. To find your Representative, go here; to find your Senator, go here.
Connecticut Connecticut becomes the first state in the nation to have required paid sick days -- up to 40 hours per year for those in the service industries with 50 or more employees. WOOHOO!!!
We had a productive meeting with the Office of Policy and Management on May 3 to talk about the new insurance exchanges. They've been meeting with all stakeholders -- insurers, brokers, business, consumers, advocates -- and listening a lot. Where this will all lead us remains to be seen, but there certainly are a lot of people who are engaged in the process.
In other positive news, although full-blown SustiNet with a full public option will not happen right now, the Governor has agreed to create an Office of Health Reform and Innovation, and to study possibilities, including a public option that those of us who support SustiNet really want. This new Office will be located in the Lieutenant Governor's Office. Nancy Wyman has long been a champion of health care reform and universal coverage. We're very pleased that she will oversee this effort. And the House has passed a pooling bill that will allow municipalities and nonprofits to participate in the state employee insurance plan.
Finally, but not less importantly, Connecticut has initiated the Connecticut Insurance Premium Assistance Program which helps AIDS patients pay their insurance premiums. Contact the Department of Social Services for more information.
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, Arkansas 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 and the Governor now to thank them.
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, CT. 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. |
|
Jennifer C. Jaff, Esq.  Executive Director
|
|
|
