| 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!
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Look What I Just Found!
Discover the AMAZING Crystal Emery, who makes films and writes childrens' books from a wheelchair, confronting medical issues that nobody should have to face. Her film, the Deadliest Disease in America, documents the racial disparities in health care delivery in the United States.
Is it racism or classism that motivates the way some people are treated in the health care system? Do people with chronic illnesses who need more attention suffer in our system? Crystal has me thinking and re-thinking these issues in new ways. Watch the trailer for her film and explore her website to see all that she has accomplished.
I've said it a thousand times: If everybody did what they could do, the world would be a far better place. Crystal is doing her part. Are you? J
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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.
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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!
October 23: CCFA Manhattan
November 5: Thrive webinar
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.
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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 Connecticut. Nevertheless, generous donors from many states make unsolicited donations for which we are very grateful.
THANK YOU!
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Ms. Jaff Goes to Washington
On July 28, 2010, I had the unique honor of participating in a Forum on Better Care sponsored by the Campaign for Better Care, a project of the National Partnership for Women and Families, the National Health Law Program, and Community Catalyst. It was a thrill for me to speak at the National Press Club, where the walls are lined with pictures of dignitaries and celebrities who've come before.
The Forum began with the keynote speaker, Senator Sheldon Whitehouse (D-RI), who gave a truly energizing talk. He said that if you are concerned about the national debt, you have to be concerned about reforming the health care delivery system. In 1955 when Senator Whitehouse was born, the United States spent $12 billion annually on health care. Today, we spend that much in two days. He said that there are plenty of places in the system where we can decrease cost while improving care. For example, it costs 3-5% of spending to administer Medicare, whereas 25-27% of commercial health insurance premiums go to administrative costs. He estimated that we are spending $128 billion per year on excessive administrative costs that could be streamlined. He strongly urged support for health information technology (primarily, electronic health records), which will increase safety, efficiency, and economic growth. Senator Whitehouse compared the need to reform the health care delivery system to President Kennedy's goal of walking on the moon. He said we don't need vague generalizations like "bending the cost curve," but instead, we need a single concrete goal with measurable outcomes.
Next was the panel of caregivers and patients that I was on. It was moderated by Gail Sheehy, noted author of Passages and many other books, including her most recent book about caregiving. Gail's experience is intensely personal; her husband battled cancer and she cared for him. She and two other caregivers told their stories, and I told mine, as well. One of the caregivers told a story about his mom being discharged from the hospital to a nursing home in the middle of the night. After her children realized she was not getting any food or medicine, the nursing home acknowledged they didn't even know she was there. Another caregiver talked about how hard it is to find community-based resources when you have no experience in the system. All of the caregivers and I talked about how difficult it is to navigate the fractured health care system, and how important it is to try to move to a system of coordinated, patient-centered care.
Then came a panel of health care professionals -- a geriatrician, a nurse who works in hospital discharge planning, and a social worker at a hospital -- moderated by author Jonathan Rauch. All of them also stressed not only the need for coordinated care, but the need to reimburse health care providers for care coordination, including discharge planning to ease transitions from hospitals to the community so as to lower the rate of hospital readmissions.
The final speaker was Peter Lee, HHS Director of Health System Reform. Peter stressed that the health reform legislation, while a watershed moment, is a starting point, not an end. He stressed four goals: deliver better care, lower cost, promote health and wellness, and make sure we do it all for the benefit of patients, families, and those who work in the health care system. As to the first goal, he stressed the need to reduce hospital readmissions, which entails creating incentives to hospitals to spend resources on things like discharge planning. He also talked about health care acquired illnesses and how innovations like e-prescribing will help prevent adverse drug interactions. He also noted that the health reform law creates a Patient Centered Outcomes Research Institute that will focus on how to make the system work better for patients. As to lowering cost, he stressed the need to reward value. As to the third goal, promoting health and wellness, he stressed the need to focus on prevention and to marry the concepts of prevention and treatment. Finally, he recognized that the system cannot be reformed from the top down; it must work for people with their "boots on the ground."
In all, the event was really stimulating and thought provoking. For me, the stories of the caregivers were the most poignant, and I hope that my story touched a person or two, as well.
The video of the event is here. Watch, learn, cry a little, and mobilize. Jennifer
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Preventive Care: FREE!
One of the provisions of health reform to take effect this year will be the requirement that preventive care be provided without copayments or coinsurance. Not only does that mean that you get a free flu shot and your child gets free immunizations, but also that screening mammographies and colonoscopies that you have done in network will be free to you, as well.
There are a few hitches, of course. First, if you go to the doctor for another reason and she doesn't bill the preventive care under a separate code, you are going to owe the copay for the office visit. However, if your doctor is careful to bill the preventive care separately, you should have no copay or co-insurance as long as you stay in-network.
The other big hitch is that, while broad categories of preventive care like colorectal cancer screenings are free, insurers retain the right to determine the frequency and manner of screening. So your insurer may argue that a sigmoidoscopy is good enough for you. We have prepared comments which we have submitted to the Digestive Disease National Coalition for their review arguing that the frequency and manner of screening for high risk patients should be up to the doctor rather than the insurance company once a doctor certifies a patient as high risk.
But even this small step will allow everybody with insurance to obtain preventive care without copays and coinsurance in many situations in which the cost would be prohibitive today. Progress.
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Health Reform Law Expands Appeal Rights
Another really important feature of the new reform law that will take effect in September is the expansion and clarification of consumers' right to appeal adverse insurance company decisions. I am so excited about the fact that we will have uniform standards that will govern appeals -- states, insurers, and health plans will be able to provide more process, but not less. In addition, the notice of adverse decision that gets set to consumers will be clearer so you will know your rights whenever you get a denial of coverage.
But the biggest boon to consumers is the expansion of external appeals, the right to have an independent review organization review your denial of coverage and consider whether to overturn your insurer's or plan's decision. For those of you living in states that don't have external appeals for small group and individual policies -- Mississippi, North Dakota, South Dakota, Alabama, Idaho -- you will now. And most of all, for those of you in self-funded plans -- large group plans, mostly -- you now will have a right to independent review. This is HUGE. Now, your plan will not have the final word. About time.
There still will be plans that don't have to provide the expanded appeal rights -- so-called "grandfathered plans," which don't have to follow most of the health reform changes. As President Obama promised, people are allowed to keep their current plan if they are happy with it. That means that plans that existed on the day when health reform was signed into law that do not substantially change their character (benefits package, copays, deductibles, etc.) are allowed to stay exactly as they were. But if they change, they no longer will be grandfathered and will, instead, have to comply with all of the provisions of the new law, including the expanded right to appeal.
Since most plans do change over time, it's highly likely that plans will lose their grandfathered status along the way. What changes "count" for grandfathering is a very technical subject for another day. We currently are working on comments to the draft grandfathering regulations to make sure that changes that affect you will result in the loss of grandfathered status.
But starting September 23, 2010, all plans other than grandfathered plans will have to provide you with a right of independent review of plan decisions. That is a huge benefit to consumers, and a part of health reform that we believe is truly critical to the lives and health of the patients we serve.
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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
We're still filing a lot of comments to regulations implementing health reform. Our comments to the regulations implementing the requirement that insurers cover children to age 26 are here. Our comments to the regulations implementing the requirement that the federal government create a web portal that will allow you to find and compare your insurance options are here. Our comments to the regulations implementing the requirement that insurers spend over 80% of premium dollars on healthcare-related costs are here. We also filed comments on HHS's draft strategy for management of multiple chronic conditions, which you can find here.
We're currently working with a national coalition on comments to regulations that determine which health plans will be "grandfathered" and, so, not subject to some of the reform provisions, as well as on comments to the preventive care regulations, on which we're partnering with the Digestive Disease National Coalition. In addition, we are in the process of drafting detailed comments on the new Pre-Existing Insurance Plan (PCIPs or high risk pools) and appeals provisions, drawing from our experience filing insurance appeals on your behalf nationwide.
To find your Representative, go here; to find your Senator, go here.
Connecticut
The Connecticut legislative session has ended, so we're focusing on SustiNet design (for more info, go here). As always, it's always good to contact your State Senator or Representative and tell them how you feel about things. Your State
We have nothing new to report here at the moment, but please help us gather information for our next newsletter. Is there something happening in your state's legislature? 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. |
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Jennifer C. Jaff, Esq.  Executive Director
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