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Save the Date
The Second Annual Team McCready Global Fundraiser to benefit Advocacy for Patients with Chronic Illness will be held on March 26, 2011. Venues are being chosen now, all over the globe. So far, Hartford, New Jersey, Seattle, Maui, Iowa, and London are confirmed. Playing live at the Seattle event is Star Anna and Jodie Watts with Rick Friel -- don't miss it if you're in the area. And wherever you are, please save the date.
For updates, go here.
And if you want to participate by organizing a party in your home town, just let us know and we'll set you up!
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| 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.
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Look What I Just Found!
I have two for you this month. First, the Association for the Advancement of Wound Care includes patients, providers, caregivers, and others an opportunity to build collaborative community to facilitate optimal care for those who suffer with chronic, hard to heal or non-healing wounds. Through a grant from Healthpoint, there are FREE memberships available to patients and caregivers. So don't delay.
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Second, well, this is not really a "find," but I'm bursting at the seams with this news.
Advocacy for Patients has been invited to the White House to meet with Kareem Dale, the President's Special Advisor on Disability Policy. The topic of our conversation will be chronic illness and invisible disabilities, and the obstacles that those of us with invisible disabilities face.
The Advocacy for Patients delegation is quite impressive. Along with me will be Janis Arnold, LICSW, a fabulous social worker at Boston's Children's Hospital's IBD Center (and Advocacy for Patients Board member); Jon Reiner, author of two upcoming books about his experience with chronic illness; and Wendy Shanker, author of Are You My Guru? How Medicine, Meditation and Madonna Saved my Life (which you really must read if you haven't).
Expect a full report in next month's newsletter -- or maybe sooner if the excitement gets to me and I can't wait!
Wish us luck. We'll do our best to speak for all of us with largely invisible chronic illnesses!
Jennifer
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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 have not yet been determined, but check back here for more information. To learn more about Get Your Guts in Gear, see their website for details or call 866-9IGOTGUTS (866-944-6848).
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Advocacy for Patients on the Move!
February 4: The White House
March 26, 2011: Team McCready Fundraiser
April 8, 2011: Mike McCready's Flight to Mars benefit for Advocacy for Patients
November 20, 2011 (tentative date): CCFA Long Island
Can we do a webinar for your organization? Contact Jennifer and we'll be happy to accommodate your request.!
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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.
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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!
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Guns, Lies and Health Reform
Last month, six people were killed and 14 more were wounded when an angry, probably mentally ill young man decided to shoot his Congresswoman, Gabby Giffords, and anybody else who happened to be in the vicinity, including a nine year old little girl. Immediately after the shooting, many people on the left blamed the Tea Party's rhetoric for inciting this young man. Understandably, the Tea Party -- most notably, Sarah Palin -- rejected this, arguing that their words did not make the shooter pull the trigger. That's true. Blame for the shooting is not fairly placed on the shoulders of everyone who has ever used a gun analogy or a target in a graphic. It's also true that there is heated rhetoric on both sides of the political aisle, so blaming the left as Sarah Palin tried to do was just as wrong as blaming the right.
So now that we've gotten the issue of blame out of the way, let's talk about how we talk to each other, and, in particular, how we talk to each other about health care. Because whether or not this young man was encouraged in his violent thoughts by the words or images that all of us have been using, the shooting was a reminder that how we talk to each other matters.
There's been heated political rhetoric in America as long as any of us can remember -- certainly, as long as radio, television, and the internet have allowed us to engage in national debate in real time. But last summer, when health reform was pending and Congress went on recess, the Tea Party began to disrupt town hall meetings, painting Hitler mustaches and white-face on pictures of President Obama, and bringing guns to political events, and the rhetoric was ratcheted up a notch -- on all sides. Instead of arguing about whether everybody should be required to purchase insurance, we were calling each other names. The environment became filled with hate. Not just disagreement; hate.
It scared me. I commented many times on various blogs about how afraid I was by the way people were talking to each other. When did we lose the ability to engage in civil discourse?
I think there were a lot of triggers, most of which I will not discuss here. But one of the big triggers was health reform. But why did the rhetoric about health reform get so out of control?
For those of us who are in favor of reform -- who actually would have gone further, creating a Medicare-for-All type of system -- health care is a life and death issue, and this was the best opportunity we as a country have had to reform our health insurance system as we were ever going to have. And the system was in desperate need of reform. With over 30 million people uninsured in America, tragic stories of illness and death abound. Insurance premiums have more than doubled in just the last five years in some places. Businesses have been forced to eliminate insurance for their employees. And people with pre-existing conditions -- meaning everybody with a chronic illness -- could not get insurance in many states for any amount of money unless they were lucky enough to get it through their job. People who have insurance can't afford their co-pays. Medical debt is the leading cause of individual bankruptcies. The system was and still is horribly broken, and those of us who are sick bear the unfair brunt of all that.
And those of us who are in favor of reform did compromise -- more than we've been given credit for. We abandoned the Medicare-for-All approach. And the reform law includes many provisions that Republicans wanted -- no coverage of abortion, illegal immigrants, for example. Senator Max Baucus spent months negotiating with Republicans on the Senate Finance Committee trying to deliver a bill they could support. In the end, after giving them many points, only one Republican voted in favor of the bill that came out of that Committee, and she (Olympia Snowe of Maine) voted against the final bill in the end. But throughout the months of negotiation, the bill we wanted -- which was reported out of the Senate Health, Education, Labor and Pension Committee -- became a bill we could live with, and the law that we got. We were focused on changing the status quo, and we were prepared to concede a lot of details to get there.
For those of us who lived the process day to day, then, it's been hard to understand the ferocity of the opposition to health reform. After all, if we all agree that the status quo is broken and something had to change, why can't we just talk through the details? If we were willing to compromise, why could we not work out a solution that worked well enough for everybody? Why did health reform upset people to such an extent that we could not have civil discourse about it and still can't?
I believed then, and I continue to believe, that most of the opposition to health reform is based on fear sparked by misinformation. A government take-over of health care? No, not at all. The government would continue to run Medicaid and Medicare, the federal employee plan (in which all members of Congress, including Republicans, are enrolled), military health care and so on, but the law -- especially once Medicare-for-All was abandoned -- does not replace private insurance companies. It regulates insurance differently than it has in the past, with the federal government taking a larger role, but leaving a whole lot up to the States, which have always regulated insurance. But you will still buy insurance from a private insurance company, and you will still see your doctor of choice. Government will not interfere with your relationship with your doctor. (Indeed, as I sit here with hundreds of pending insurance appeals, I cannot help but remind you that your private insurance company interferes with your relationship with your doctors all the time.) There simply is no government take-over of health care.
Then came the death panels -- completely and totally false. And allegations that the government was going to get direct access to your bank account. And that you would have a computer chip implanted in you by the government. Where did all of this craziness come from?
I have my own beliefs. The Republican leadership -- Senator Mitch McConnell, the Minority Leader of the Senate, for one -- has stated that the GOP's express goal is to limit Barack Obama to one term. Idealogues who wanted to deprive the President of a victory at all costs have used FOX News and other media to spread what they fully know are complete lies about health reform that scared people to death -- or to incivility. Spreading misinformation to rile people up solely for political gain is wrong. That is not how we make good public policy.
But the Democrats have to take responsibility for not doing a better job of communicating the truth about reform. Many of us tried, but we failed. And leadership failed, too. President Obama, Nancy Pelosi, Harry Reid -- as much as I tend to agree with them on the issues, they were so focused on getting a law passed that they forgot that they needed the American people to understand and sign on. That left a huge vacuum in which people could deliberately mislead people and create what has become an irrational fear of health reform. Health reform became the great unknown, and people are afraid of things they don't understand.
And now, it's late in the game and people are polarized and it seems nearly impossible to convince people that what they hear on television isn't the truth. How does Jennifer Jaff go up against Glenn Beck or Sean Hannity? Still, we need to find a way back to civility. And it can't take more shootings to make that happen.
I don't have big answers to this. As long as what's going on in Washington has more to do with who should be President in 2012 than it does about what's best for the American people, the public debate will be skewed. So I guess I'll just keep talking to you, who know me well enough to know that my heart is in the right place, and that I'd never knowingly lie to you. You and I, we can talk about health reform, and you can talk about it with your family and friends. We can agree that the status quo was and is horribly broken, and that something had to change. We can agree that it's good to eliminate pre-existing condition exclusions, lifetime caps, retroactive cancellations of policies because someone gets sick. We can agree that kids under age 26 should be able to stay on their parents' policies, and that everyone should be able to get preventive care -- your yearly check-up, your mammogram, your screening colonoscopy -- regardless of copays, especially since preventive care helps reduce health care costs overall. And we can agree that seniors should be getting help with the Medicare Part D "doughnut hole." And we also can agree that there are parts of the new law that could be better. I personally don't have a problem with requiring people to have insurance as long as we make insurance affordable with subsidies and tax credits for small business. But maybe you have a better idea. We can talk it through, with mutual respect and dignity intact.
Indeed, even those on the right who believe that government is too big and should get out of the business of regulating can peacefully disagree with those of us who believe that a safety net is something a humane society has to do. We can talk philosophy of government. We can strive to find middle ground. And we can do it with mutual respect and dignity intact.
In the end, we are one nation, one people. We all live with decisions with which we disagree. We attempt to change things we don't like through discussion and through voting. And yes, we can do it with mutual respect and dignity intact.
As President Obama said in the State of the Union, "we do it together or not at all." That's how America works.
What we cannot do is allow ourselves to be incited by ANYBODY to hatefulness, because hatefulness does breed violence. A young man in Tucson who's mentally ill may not need a whole lot more than hateful rhetoric to put him over the top. ALL of us are responsible for the climate that we have allowed to consume us over health reform. That means all of us are responsible for stepping back, taking a deep breath, and remembering to talk about the issues, not about name-calling and blame.
Yes, we can have meaningful health reform -- possibly, if not probably, somewhat different from how it is now -- and we can get there with mutual respect and dignity intact. That must be our goal. That must be our common promise.
Jennifer
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Rare Disease Day: February 28
On February 28, 2011, people in 25 countries will celebrate Rare Disease Day. This year's slogan is "Rare but Equal." There will be lots of events in which you can participate. For all the details and information about events near you, check out the Rare Disease Day 2011 website.
Or create your own mini-event. Those of you with rare diseases, try simply talking to people and educating them about what it's like to live with a rare disease -- difficulties in diagnosis, treatment plans, insurance coverage, and a lack of support and understanding -- feeling alone, as so many of us do. The more we tell our stories, the more people understand.
Visit the Rare Disease Day Facebook page, too!
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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
As you must know, the House of Representatives passed a law that would repeal the health reform law. The next day, they assigned four committees to come up with alternatives, but without a timetable or any real information about what issues they will address. Expect endless hearings and lots of votes on particular aspects of health reform. For example, although the reform law already prohibits the use of any federal funding to pay for abortions, anti-choice proponents want something stronger -- the elimination of abortion as a covered benefit from any insurance plan in the Exchanges, even if the insured is paying the full premium with private dollars. We also expect a push towards malpractice reform which could take hold; there's nothing about malpractice reform that couldn't co-exist with the health reform law that we already have. Some members want to authorize insurers to sell policies across State lines. This would eliminate mandatory coverage of items that have been legislated in specific States, so there is strong opposition to this. Finally, as you know, there is tremendous opposition to the requirement that everybody purchase insurance, so look for alternatives. There may even be a proposal to use high risk pools to cover people with pre-existing conditions rather than eliminating pre-existing condition exclusions. That would limit people with pre-existing conditions who do not have employer-based insurance to only one insurance option rather than many, thereby eliminating competition and driving up premiums. High risk pool premiums here in Connecticut are nearly $1500 per month! So before you jump on any bandwagons, please remember to first educate yourself so that you know exactly what you're supporting.
And then contact your members of Congress and tell them what you think. To find your Representative, go here; to find your Senator, go here.
Connecticut The Connecticut legislative session is under way. The Public Health Committee will be taking up SustiNet design and implementation (for more info, go here). The SustiNet Board submitted a 200 page report to the General Assembly, and the idea of pooling all of the people who already are insured by the State of Connecticut (State employees, retirees, HUSKY members, etc.) has great appeal. Since the budget deficit is a serious concern, the issue of cost is huge. SustiNet's supporters, and the Board's report, all argue that pooling would reduce the cost of health care by "in bulk" purchasing. SustiNet's opponents argue that setting up the plan is too costly at a time of budget deficits. Hopefully, those of us who support SustiNet -- including its attention to chronic disease management through the use of medical homes and other programs -- will win the day. Ultimately, SustiNet could be offered to small employers, municipalities, nonprofits and, eventually, everyone. 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 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 and others. 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. |
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Jennifer C. Jaff, Esq.  Executive Director
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