My Birthday is June 12
| Make a donation to my birthday wish on Facebook Causes here. Donations are tax deductible. I'm going to be 53 years old, so I need your help to keep on kepin' on. Even a $5 donation will bring me closer to my goal. Thanks. Jennifer
| |
|
| 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!
|
Look What I Just Found!
Everything you ever wanted to know about hospitals all in one place: Hospital.com! This hugely resourceful website will help you find a hospital, information on health reform, innovations being initiated by hospitals around the country -- really everything you ever wanted to know about hospitals.
And here's another that looks really interesting. The Prepared Patient Forum teaches you how to be a good patient -- what questions to ask, how to choose doctors and communicate with them, and how to actively participate in the management of your own disease. It looks like a great resource.
Check both of these websites out now!
|
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.
|
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!
June 13: Get Your Guts in Gear closing ceremonies, Saratoga Springs.
June 30: Oley Foundation conference afternoon break-out sessions.
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.
|
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!
|
|
|
Better Care vs. Less Care? Wrong Question!
Budget Chief Peter Orszag says we need better health care, not more
health care. As a concept, that sounds reasonable. However, I'm
sitting here with a full docket of health insurance appeals and I'm
trying to square Mr. Orszag's statement with the fact that there are
treatments that doctors say are better for their patients than the
alternatives, and it's a nameless, faceless insurance executive making
the ultimate decision.
Examples. There's a relatively new drug
called Avastin. It's used to treat certain kinds of cancer, but it's
not chemotherapy, so it doesn't have all the awful side-effects. It's
FDA approved for colon cancer, non-small cell lung cancer, glioblastoma,
breast cancer, and kidney cancer. I have one case involving non-small
cell lung cancer in which the insurer won't pay for the Avastin because
it wasn't given in conjunction with one of the more powerful,
destructive chemotherapy drugs, as the FDA labeling suggests. I have
several other cases involving other kinds of cancer -- prostate cancer,
for example.
The whole issue of how FDA labeling should be
treated by payers and doctors is actually pretty clear if you listen to
the FDA. In 1982, the FDA issued a policy guidance that said that
doctors should not feel restricted by FDA labeling, that sometimes a
drug's manufacturer won't want to spend the money to do the massively
expensive studies to expand a drug's labeled uses, but that doctors will
find the drug to be incredibly useful for those labeled uses. The
FDA's policy guidance encouraged this sort of responsible, conservative
experience-based use of drugs.
However, most of the time, when an
insurance company denies coverage of a drug or device because it is
"experimental or investigational," it's also really expensive, like
Avastin. I've had doctors at insurance companies tell me that they
feel a responsibility to make sure patients aren't treated irresponsibly
by their doctors. Bullsh*t. I don't buy for one second that the
reason an insurance company denies coverage of a cancer drug that's
being given to someone whose doctor has already tried everything else,
and who says they will die without this treatment, is because they care
about the patient. It has to be about money.
But what would
Peter Orszag do? Not more care; just better care. So if Avastin is
better but more expensive, we should cover it? Who gets to decide
what's better? Because as long as it's not the treating physician, it's
someone with a financial incentive, and that will lead to decisions
that are motivated by the wrong thing. After all, we're not going to
have so-called "death panels" who decide who gets treated and who
doesn't, right?
Peter Orszag, however, says it can't just be the
treating physician either because that doctor has a financial incentive too:
The more he treats, the more he get paid, right? So who, other than the
patient, doesn't have a financial incentive, but has enough expertise
to make an informed, fair decision?
The answer already exists in
45 states (except MS, ND, SD, ID, WY) for fully-funded plans (i.e., not
for self-funded plans, in which large employers pay an insurance company
to administer the plan, but the employer actually pays for the health
care itself): External appeals. There are independent review
organizations staffed by doctors paid (usually) by the state out of a
fund that's made up of a fee collected from insurance companies who do
thorough reviews of medical records and the medical literature and make a
decision. They owe no loyalty to anybody; their decisions are truly
independent. And their decisions are binding on the insurer (except in
Florida, where the insurer can take the matter to court to try to get
them over-turned -- bad idea, giving a judge with no medical knowledge
the final say). In my experience, they do a great job. I win the cases
I should win, and every once in awhile, I also lose a case that I knew
from the start was a stretch. The system works.
One of the less
talked about pieces of health reform is the expansion of external
appeals. Beginning in September 2010 (to be phased in), every insured
will have the right to pursue an external appeal, including those in
self-funded plans.
If we really want better health outcomes without expanding cost,
and we all agree that the best way to accomplish that is to have experts
making critical treatment decisions who do not have any financial stake
in the outcome of a treatment decision, we should be focusing on making sure that
these external appeal processes remain as robust and independent as they
are today. I've been working in health insurance for about 15 years,
and external appeals are the best thing that has happened to consumers
in that time. I think they may well be one of the best pieces of health
reform, as well.
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.
|
Want to Learn To Write Insurance Appeals?
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, 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!
|
Free Webcast From the Children's Digestive Health and Nutrition Foundation
On June 3, 2010 at 8 pm. Dr. Wallace Crandall from Columbus Children's Hospital will be presenting a free webinar called Taking Your IBD Medications: Solutions from Children, Teens, Young Adults and Their Families. Dr. Crandall is wonderful, and all of the CDHNF's events are of the best quality. I strongly encourage families with kids with IBD to participate in this webinar. For more information, and to register, go here.
|
Is Your COBRA Subsidy About to Expire?
For those of you who started on COBRA in March 2009, your 15 months of
the COBRA subsidy is about to expire. How will you find or pay for
insurance from then on? You are entitled to 3 more months of COBRA in
most states; in California, you're entitled to a total of 36 months
(although that California law doesn't apply to self-funded plans, so
most large employers). However, you have to pay the premium yourself,
and if you're unemployed, that may be impossible. It now looks like
unemployment will be extended to November 2010 instead of December
(thank budget crunchers in Congress for making this a priority when
people are suffering so). If you don't have pre-existing conditions,
you may well be able to find affordable individual insurance. However,
if you do have pre-existing conditions, your options will be limited.
If
you have a pre-existing condition, the key will be exhausting your
COBRA -- coming up with that additional 3 months of premium -- so you
will be what's called HIPAA eligible. That means that there must be at
least one "guaranteed issue" option for you. In states with high risk
pools, that's typically the guaranteed issue option. In other states,
you will have two options, and they may be fairly broad. To research
the options available in your states, I like the National Association of
Health Underwriters website --
just choose your state and look for the information for HIPAA eligibles.
If you find that site difficult to navigate, try Georgetown
University's Health Policy Institute's great website, which has more
detailed analysis. If you can't figure it out, you can always email me and I'll research it for you -- just
remember to tell me what state you live in so I can research for you.
This
is a tough one, folks. Pay attention; don't lose coverage of your
pre-existing condition. It's very hard to get it back.
|
|
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.
Other than health care reform, this is important:
IVIg: If you're a patient with an immune or autoimmune disease, you may be interested in S. 701and HR 2002, bills to improve access of Medicare beneficiaries to intravenous immune globulins (IVIg). This is critically important legislation designed to eliminate some of the existing obstacles to getting this much needed treatment. So contact your members of Congress to support this legislation.
Bleeding disorders: On March 15, 2010, Congresswoman Carolyn
McCarthy introduced H.R. 4846 entitled The Bleeding Disorders Screening,
Awareness, and Further Education Act of 2010." If passed the bill will: - Increase research funding for all bleeding disorders
- Provide greater physician and public education on bleeding disorders
- Screen college students for von Willebrands (vWD) at institutions of
higher education
- Enhance diagnosis rates and treatment of bleeding disorders
- Decrease the number of unnecessary hysterectomies performed each
year due to undiagnosed cases of vWD.
Lift your voice and be heard.
To find your Representative, go here; to find your Senator, go here.
Connecticut
The Connecticut legislative session has ended and I've previously reported highlights. Right now, we're out of session, so there's no news. However, the SustiNet Board will be issuing a full report in July that we hope will allow us to begin implementation of health reform in Connecticut, in part by taking advantage of funding opportunities created by the federal health reform legislation.
As always, it's always good to contact your State Senator or Representative and tell them how you feel about things. Your State
Restroom Access Bills: Patients in New York and Wisconsin are making headway. Check with your local Crohn's & Colitis Foundation chapter for more information on how you can get involved.
California (AB 2170) and Florida (SB 516 and HB 275) are following Nebraska's lead in introducing legislation that does not allow changing prescription drug coverage in the middle of a plan year.
Hawaii SB 2494 requires health insurers to offer at least the same drug coverage to the insured that the insured had under the insured's previous policy with a different insurer or like entity. In other words, the bill will provide for continuity of drug coverage when a patient either switches plans or renews their existing plans. More info at the Alliance for Plasma Therapy. What's happening in your state? 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. |
|
Jennifer C. Jaff, Esq.
Executive Director
Advocacy for Patients with Chronic Illness, Inc.
| |
|
|
|
