| 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!
I am REALLY excited about this one. MyMedSchedule.com allows you to input your meds, get reminders to take them, get refill reminders so you request refills well in advance -- generally use it as your medication management system. It's completely FREE and private. You can print out your medication schedule before you go to the doctor, and make changes as needed on an ongoing basis. You can create the list in English or Spanish and even make yourself a wallet-sized version.
This is SUCH a huge issue -- studies show that medication management is a real burden for people with multiple chronic illnesses. Well, here's a really easy, free answer. Check it out now!
And while you're at it, check out the transcript of my interview with noted chronic illness author, expert and patient, Richard Cohen, on WebMD. 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). |
New Survey for Patients With PSC and IBD
If you are a patient with cholestatic liver disease (PSC/PBC) or an inflammatory
bowel disease, take this opportunity to be heard regarding the impact of your
illness on the story of your life, how you think and feel, and your ability to
be resilient! You may also earn a $50 gift certificate as a thank
you. The
study is part of an important new research project being conducted by the Burke
Narrative Studies Lab at Southern Illinois University at Carbondale. They are
examining the definition and nature of resilience, its relationship to your
physical and psychological health, and how you make sense of your illness in the
broader story of your life as one element of resilience. The goal is to identify
what you and your healthcare providers can do to improve the quality of your
life. You can take the survey now online. Your participation may help find ways for people with chronic illness learn
to be resilient. For individuals with PSC or PBC, you will also have the
opportunity to take part in an interview about the story of your life and the
role your illness plays in that story. For every 100 completed surveys, we will
have a drawing for a $50 gift certificate. All you need to do is complete the
survey. If
you want to take the survey but don't feel comfortable completing the survey
online, just give them a call at (618) 453-3407 or contact the researcher by email and he'll set it up for you. Thank you! This
project has been reviewed and approved by the SIUC Human Subjects Committee.
Questions concerning your rights as a participant in this research may be
addressed to the Committee Chairperson, Office of Research Development and
Administration, SIUC, Carbondale, IL 62901-4709. Phone (618) 453-4533.
E-mail: siuhsc@siu.edu |
Advocacy for Patients on the Move!
October 23: CCFA Manhattan
November 5: Thrive webinar
November 13(tentative): Nashville CCFA.
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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Twentieth Anniversary of the Americans with Disabilities Act
July 26, 2010 marks the 20th Anniversary of the Americans with Disabilities Act (ADA). The ADA prohibits discrimination based on disability in many contexts -- employment, schools, public accommodations like shopping malls and restaurants. We all know that it requires new construction to be wheelchair accessible, but do you really know what a difference the ADA makes in the lives of people with chronic illness?
The first recognition in the law of chronic illness came in the form of one of the 2008 amendments to the ADA. It says that an episodic illness that would be disabling when active is considered a disability even when it's in remission. This is the first recognition of what I call "chronicity" in American law. We who have largely invisible chronic illness are now visible.
The ADA was based on the proposition that, in America, people with disabilities are entitled to equal opportunities, equal participation, and equal rights in all that our Nation has to offer. In addition, the ADA is premised on the ideal that all of us are entitled to be as independent as we can be, so that persons with disabilities cannot be warehoused in institutions, but must be maintained in the community if they can and they want to be. It means that reasonable accommodations must be the least restrictive possible so as to afford people with disabilities the right to live on their own with dignity and autonomy. Freedom and equality are the promises of the ADA.
The ADA has become so ingrained in American life that we often take it for granted. Indeed, it feels like it's been around longer than twenty years, doesn't it? And yet, every day, I get calls and emails from people who are being deprived of their rights under the ADA. Wheelchair ramps are no-brainers, but is a child with a disability entitled to reasonable accommodations in private school? YES! Must an employer accommodate a person with a disability who can perform her job with the assistance of a voice activated computer or an office located as close to a bathroom as possible? YES! Must a state provide community-based supports to people with disabilities instead of housing them in nursing homes without making them wait an unreasonably long time to get to the top of a waiting list for such services? YES! The ADA does all these things and more.
So during this month of July -- and especially on July 26 -- think about how far we have come, but also about how far we still have to go. Laws can be changed in moments; attitudes take generations. We celebrate our accomplishments, ever mindful of the path we still have to travel before all of us with disabling chronic illnesses are treated as full equals.
Happy Anniversary to you all. ~~ Jennifer
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The COBRA Subsidy and What To Do Without It
Well, it appears that, when the COBRA subsidy expired on June 1, that was its final end point, at least for now. From March 2009 until May 31, 2010, the federal government was paying 65% of COBRA subsidies for 15 months for people who were involuntarily unemployed at any time between September 1, 2008 and May 31, 2010. However, in the June jobs bill negotiations, the COBRA subsidy was lost in the shuffle, with Republicans and conservative Democrats pushing hard against anything that increases the federal deficit, including extending unemployment compensation and aid to states to help with increased Medicaid expenses due to the poor economy. In addition, a 21% decrease in rates to be paid to doctors in the Medicare program was about to take effect if it wasn't delayed again, and the fear was that many doctors would leave the Medicare program if that decrease went into effect. So when the priorities all got shifted around, the COBRA subsidy was dropped out of the bill. If you were terminated before May 31, 2010, you will still get your full 15 month subsidy. If you were terminated later than that, there is no subsidy at all.
This is a huge issue for people who are involuntarily unemployed and have pre-existing conditions. If you've been on COBRA since March 2009 or later, you haven't exhausted your COBRA benefit because you've only been on COBRA for 15 months rather than the full 18 months that the law allows. Federal law says that a person is "HIPAA eligible" if s/he has had continuous "creditable coverage" for 18 months, the last day of which was through an employer-based group plan, AND if s/he has not had a break in coverage of more than 63 days, AND if s/he has exhausted COBRA coverage. If you are HIPAA eligible, you are entitled to a "guaranteed issue" plan that will cover your pre-existing condition from day one. A "guaranteed issue" plan is one that must be offered to you, whether the insurer likes it or not, and that must cover your pre-existing condition. The guaranteed issue option differs from state to state. The federal fall-back position is that all individual market insurers have to offer either all of their plans, a high deductible and a low deductible plan, or their two most popular plans. In many states, there is a high risk pool that is guaranteed issue for HIPAA eligibles, even if it has a waiting period for pre-existing conditions for people who are not HIPAA eligible. Thus, to maintain your pre-existing condition coverage, it's really important to try to maintain your status as HIPAA eligible -- and that means exhausting your COBRA coverage.
However, COBRA is really expensive. So what should you do if you're unemployed and no longer have the benefit of the COBRA subsidy? The answer has to be that you have to try everything you can to find a way to exhaust your COBRA.
The first thing to do would be to drop COBRA for anybody in your family who does not have a pre-existing condition. In many, if not most, states, if your family is relatively low income, your children can get coverage under the state's Child Health Insurance Plan (CHIP), if not Medicaid. If you have healthy family members (and I mean NO pre-existing conditions), it's likely that they can purchase individual insurance for less than the cost of COBRA. If your state has a high risk pool that does NOT have a pre-existing condition waiting period, then compare the cost of that to the cost of COBRA and see if that will work for you. If your spouse has group insurance that you can join, you can switch to that plan without losing coverage of your pre-existing condition.
But please, if you have a pre-existing condition and you do not have the option of switching to another group plan or high risk pool that will cover your pre-existing condition from day one, please try really hard to complete your 18 months of COBRA so that you will be able to purchase a "guaranteed issue" plan when your COBRA expires. Once you lose coverage of your pre-existing condition, it will take a considerable amount of time to regain it. Even if you get a new job, there can be a pre-existing condition waiting period if you've had a break in coverage, forcing you to go without coverage of your pre-existing condition for up to 12 months. Until 2014, when pre-existing condition exclusions are eliminated under the new health reform law, the failure to exhaust your COBRA will have dire consequences.
And if you are terminated from employment after May 31, 2010, there will be no COBRA subsidy. What to do then if you can't afford your COBRA? The answer will vary from state to state. In some states, you may qualify for Medicaid. In some states, there may be a high risk pool that doesn't have a pre-existing condition waiting period. Starting in July, if you are without insurance for 6 months, you will be able to sign up for a new high risk pool created as part of health reform that will have somewhat lower premiums than are typical in existing high risk pools.
What if you can't afford anything? Then it's time to research the safety net of free and sliding scale care that may be available to you if you are uninsured. For example, if you need to go to a primary care provider, you can find local free federally qualified health centers here. If you need free medication, go here, choose either brand name or generic, and look up the name of the medication by letter of the alphabet. If you need free ostomy supplies, try these folks. For free tube feeding supplies, try here. If you end up in the hospital and can't pay your bill, ask for their financial aid forms to see if you qualify for free care or a steep discount. If you need something else that I haven't mentioned (other than cash, which is nearly impossible to get), call or email me and we'll research for you and see if we can find you the help you need.
And if you go without insurance for 6 months and have been denied coverage due to your pre-existing condition, you will be eligible for one of the new pools, called Pre-Existing Condition Health Insurance Plans. Information about these plans and other available plans in your state will be available on the new web portal, www.healthcare.gov starting today (July 1). These new plans are part of health reform, intended to bridge people with pre-existing conditions until 2014, when pre-existing conditions exclusions are entirely eliminated.
The expiration of the COBRA subsidy will create many more uninsureds, which will cost the taxpayers when they turn up in emergency rooms for free care. Allowing the COBRA to expire due to deficit concerns was, I believe, short-sighted. However, it is what it is, and we have to go from here. Hopefully, you have a sense of what your options are now. Of course, if you need to discuss any aspect of this, please feel free to call or email me any time.
TAKING YOUR QUESTIONS
Do you have a question on health insurance reform? Email it to me here and I will answer your questions, either individually if the question is about you in particular, or in next month's newsletter if yours is a general question.
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Want to Learn To Write Insurance Appeals?
NOTE: Yes, I know this was in last month's newsletter, but we thought it bears repeating. So many of you need to file insurance appeals -- more than we can handle. We take what we think are the impossible cases, and we teach you to file your own appeals where we think you can. What follows will direct you to instructions on how to write your own insurance appeals.
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Even if you don't need IVIg, our IVIg Patient Resource Center is full of basic instructions on how to write insurance appeals. Just go here and use our tips to file a successful appeal.
Our IVIg Patient Resource Center focuses on intravenous immune globulin (IVIg), a blood product that is FDA approved to treat several illnesses, but that often is used "off-label," to treat illnesses for which it is not FDA approved. However, the same instructions and advice applies to lots of other kinds of insurance appeals -- indeed, anything that an insurance company says is experimental or investigational. It may be Rituxan for neuromyelitis optica; a higher dose of Humira for Crohn's disease; or Avastin for treatment of a whole range of cancers. Because these uses are off-label, insurers often deny coverage. That's where our instructions come in. Advocacy for Patients is expert at writing insurance appeals for off-label uses that insurers say are experimental or investigational.
Since there are more patients than there are staff at Advocacy for Patients, we decided to create a resource where patients can go and learn to write their own insurance appeals. There general information on how to write insurance appeals. What you'll need is to do some medical research, but that's easier these days with the advent of the internet. Go to http://www.pubmed.gov, which is the library of the National Institutes of Health. You'll find abstracts (summaries) with links to the full text of the articles, some of which are available for free, and some of which you have to pay for. But if you find articles you think will help you, take the summary to your local medical school library and they will help you get it for free. We go to the University of Connecticut Medical School Library with a flash drive/memory stick and download the articles for free!
We now have posted materials on IVIg pertaining to CIDP, multiple sclerosis, lupus, transverse myelitis, neuromyelitis optica, Guillain Barre syndrome, inclusion body myositis, polymyositis, recurrent in vitro fertilization failure, and pemphigus vulgaris. But again, the rules of the game are the same regardless of your illness and regardless of the diagnostic or treatment tool at issue.
Patients can write their own insurance appeals if only they are given the tools. So here you go!
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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
Feinstein/Schakowski: This bill would establish a rate commission that would regulate the
rates insurers could charge for health insurance.
We've been 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.
Finally, Rep. Tammy Baldwin (D-WI) is calling for Congressional hearings to explore chronic pain conditions that disproportionately or solely impact women including
vulvodynia, temporomandibular disorders (TMJ), chronic fatigue syndrome,
endometriosis, interstitial cystitis and fibromyalgia. Tell your Representative that you support this request!
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
Advocacy for Patients with Chronic Illness, Inc.
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