| 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!
WEGO Health is a social networking platform for health activists -- and much more. There are discussions, groups, information, a blog. It's free and everybody there is passionate about health care. We're in the process of fixing up our page . Come check it out!
For those of you in the Cincinnati area, on August 10, Centers for Medicare and Medicaid Services Director Don Berwick will be appearing at a luncheon round-table co-sponsored by the Campaign for Better Care to talk about the Partnership for Patients. Information and registration can be found here. Don Berwick is a visionary; I strongly urge you to try to make this event if you live in the area.
Jennifer
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What I'm Reading
The Wounded Healer by Henri J. M. Nouwen is a wonderful book that every caregiver should read. Caregivers spend hundreds and hundreds of unpaid hours taking care of people in need. It is a thankless task -- and caregivers need to care for themselves. The Wounded Healer is a gem of a book that explains how our own pain often helps us to help others. Not light reading, but well worth it.
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 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).
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| Advocacy for Patients on the Move!
September 18, 2011: CCFA Manhattan
October 2011 (date TBD) CCFA Miami
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.!
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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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Pain
On June 29, 2011, the Institute of Medicine issued a report called Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education and Research. In short, the report explained that we have an epidemic of chronic pain in America, and we aren't very good at treating it. I could have told you that. The patients who have to sign contracts with doctors promising not to take any non-prescribed drugs for pain, who randomly drug test their patients. The patients who can't find a doctor anywhere to treat their pain. The patients who are accused of drug seeking when all they want is a moment's relief from the unrelenting pain they suffer.
Our staff attorney, Nicole Netkin-Collins, has become sort of an expert in complex regional pain syndrome (CRPS, otherwise known as RSD). CRPS is a rare, little-understood disease marked by excruciating pain, often from head to toe. Because it's rare and nobody understands its cause, insurance companies are reluctant to pay for expensive therapies that haven't been tried and tested on many hundreds of patients over a long period of time. But like some of the neuropathies, there is no underlying cause of this pain, or if there is, nobody has yet identified it. In other words, it's not like arthritis, where we understand the underlying cause of the pain (inflammation) and can treat that along with treating the pain. In the case of CRPS and other, similar pain illnesses, there's just pain. It's debilitating. Insurers want to use opiates rather than expensive drugs, but most of these patients have already tried everything, to no avail. Nobody really thinks OxyContin is going to resolve CRPS or any of the neuropathies. But getting any other treatment paid for by insurance is a huge battle. Although we are very successful in insurance appeals generally, we haven't won a single CRPS appeal -- and we've pulled out all the stops in these cases, to no avail. We can't explain how IVIg or ketamine or lidocaine works because nobody really understands it. The studies that exist are small -- but this is a relatively rare condition, so they are small of necessity. But this is enough for insurers to justify denials of coverage.
And then there is Actiq or Fentora, two forms of fentanyl that are taken orally rather than in a pain patch or an IV. Almost no payer covers it because it's only FDA approved for cancer pain. Yet, I have talked to patient after patient who has tried everything and this is the only thing that works. But it's expensive. Medicare won't cover it. So the commercial insurers follow suit. We've appealed and appealed over and over again, and gotten nowhere. I know one patient whose mom has been battling Medicare over this. She actually won her hearing, and Medicare is taking her to the appeals council to try to get the decision overturned. What is it about pain that nobody wants to treat it?
It appears that chronic pain -- or at least certain types of chronic pain -- is more common in women than in men. The Chronic Pain Research Alliance -- comprised of the Endometriosis Association, the TMJ Association, the CFIDS Association, and the National Vulvodynia Association, along with the Campaign to End Chronic Pain in Women -- issued a report in June called Chronic Pain in Women: Neglect, Dismissal and Discrimination. They found that women report chronic pain that is more frequent, severe, and long-lasting than men, but their pain is treated less aggressively than pain in men; and medical professionals are more likely to dismiss chronic pain in women and attribute it to emotional factors, dismissing real pain as a mental health issue. The report outlines reforms that should help to address this problem.
While gender definitely is one factor, there are others. Doctors don't like treating what they can't understand. I heard a story from a well-established doctor. She saw a patient who was in terrible pain. She sent him to the clinic to be worked up and admitted to the hospital. When she got to the clinic, the patient was doubled-over in pain and the residents were about to discharge him. She said NO, we have to figure out where the pain is coming from. Admit him, run the tests, find the cause and treat that -- and in the meantime, give the man some pain relief. The residents saw only something they did not understand.
I heard a similar story recently about a sickle-cell patient. Sickle-cell flares are horribly painful. Sickle-cell is most common in African-Americans. So an African-American sickle-cell patient went to the emergency room due to a very bad flare and they accused her of drug seeking and sent her home. Does it matter that she is African-American? You decide.
I've had horrendous bouts of pain with intestinal blockages. I can't count the number of times I've been told that it's best to not treat the pain so as not to mask symptoms.
Pretty frequently, I read about a doctor up on charges for prescribing pain meds; part of the problem is that doctors are afraid to write prescriptions for pain medication as a result. Of course, some of these cases are real; there are unscrupulous doctors who prescribe pain meds to people who don't need them, who sell them on the street. Fake prescriptions. Doctors running their own pharmacy in which all they sell are pain meds. So it's not that there's no abuse. But is that a reason why patients need to suffer?
Nearly 116 million people suffer from chronic pain. Between 10 and 50 percent of people who have surgery end up with chronic pain. Patients with chronic pain become suicidal. But chronic pain often goes untreated because it is not understood, it can't be seen on a test, and doctors are either doing all they can to avoid or dismiss complaints of pain or they are looking for the underlying problem rather than for a treatment for the pain itself. Whatever the cause, the patient suffers.
I've been talking to a woman in Washington State, which passed a law that is just now taking effect that says that doctors who want to prescribe opiates have to consult with a pain management specialist first. Imagine how hard it is to find a doctor to treat chronic pain in that environment. She is suicidal. I've tried to find her doctors; she saw one who was so cruel that she left in tears. If she goes to the ER, they send her home. She had a pain management specialist, but he up and left the state with her medical records and no forwarding address, so she can't prove that she has a diagnosis of fibromyalgia or that she's been on pain meds -- responsibly -- for years. Now, she doesn't sleep. She barely leaves her house. She just wishes she were dead. (If you are reading this, this is for you).
Chronic pain is real. There are changes in the central nervous system and spinal cord that occur when pain is not treated. Indeed, the Institute of Medicine -- not exactly an arm of the Colombian drug cartels -- says the best way to deal with chronic pain is through prevention and early treatment. But many doctors' first response is to wait awhile and see if it goes away. Trust me, it doesn't.
Contrary to the belief of some, nobody wants to be a drug addict. Indeed, I've learned myself that, when you are in bad pain and take pain meds, your head actually stays pretty clear because the meds go to the pain, and you don't get much of a "high." I've yet to meet a chronic pain patient who wouldn't rather have their pain go away than take opioids.
I myself have, at times, had to beg for pain meds. I've never gotten pain meds other than immediately after a major surgery without begging and pleading and going for months in agony. Every day, my knees hurt, my hands hurt, my feet hurt, my back hurts. My right leg is sort of numb with shooting pins and needles that feel like an electric brand. And there's "my spot" on my abdomen -- the spot where adhesions seem to like to grow -- which, when touched, causes me to jump to the ceiling. I take 13 different prescription drugs and not one of them addresses any of this pain. This is my baseline, the "normal" that I live with. I am not complaining; but I know so many of you are in the same boat, so maybe it helps to know that you are not alone. Most of us with chronic illnesses have some kind and some degree of pain. And most of it goes untreated.
See -- when you're treated like you're drug-seeking, you hide. You stop complaining. You cower alone in the dark with no hope and no rescue on the horizon. If the Institute of Medicine is right and there are more of us with chronic pain than there are diabetics or people with heart disease, then we can force change. All we have to do is come out of the shadows and speak with one voice: We will not take it any more! Jennifer
For resources, try the American Chronic Pain Association, the American Pain Foundation , or the US Pain Foundation . |
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On the Move!
Well, it's August, which means by the time you get our next newsletter, we will be ensconced in our new digs at 195 Farmington Avenue, Suite 306. Our move date is September 1. Although we have a ton of work to do to pull this all off, we are very excited about our new home.
The new office is 1100 square feet -- an office for me, an office for staff attorney Nicole, and then wide open space with our administrative assistant Echo at the front desk, a conference table and chairs for our interns, and lots and lots of file cabinets.
This move is huge for Advocacy for Patients. When I started in March 2005, it was me working out of my house, living on savings. Eighteen months later, I was drawing a salary; then I hired our first administrative assistant, turning my guest bedroom into another office. This past March, Nicole joined us full time; she's housed in what used to be my den. The interns have been working at my dining table all this time. And there are boxes of books and supplies and files in every corner we could find.
Moving into commercial offices feels to me like we're finally real. We're here for the long haul. Indeed, the organization would be able to survive without me now that it's not dependent on having my home.
It's a scary move since it increases our monthly expenses in a huge way. I've been paying the phone bill, for example; now, we're going to have cable internet and phones and a computer system with a service contract, a copier that may be leased rather than bought -- and rent!
But I've learned to trust not only myself, but the generosity of those of you who have used our services -- not to mention a little help from Gloria Steinem, Mike McCready of Pearl Jam and his wife, Ashley O'Connor, Wishlist Foundation , Connecticut Health Foundation , and the Universal Healthcare Foundation , to name a few.
I can't tell you how much your support means. There's one woman who we represented in a disability appeal who sends $20 per month. There's a family that donated $10,000 this year. The small donations energize and empower us just as the large ones do.
And so we thank you for helping us to grow to meet your needs and the needs of others with chronic illnesses nationwide. We love our work because we treasure all of the friendships we've made with all of you.
In June, I got a high school graduation announcement from a young man -- he was a boy when he was one of our first clients, and now he's living his life, feeling well, and excelling in every way. All the money in the world can't buy us the feeling we get when we hear from those of you we've worked with about how we've touched your lives.
So thank you -- and I hope, if ever you're in the area, you'll stop by 195 Farmington Avenue, Suite 306, and say hello. Jennifer
P.S. - Please don't forget that we'd LOVE original artwork -- including children's -- to hang on the walls of our new office. So if you can't make a financial donation, draw us a picture that will make us think of you.
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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 filed two sets of comments on the regulations amending earlier regulations on insurance appeals, one on behalf of Advocacy for Patients , and one on behalf of fifteen organizations including Advocacy for Patients.
But really, the last month has been all about the debt ceiling, and you're probably sick of hearing about it. It appears that Congress and the President have reached an agreement that allows the President to raise the debt ceiling by about $900 billion now and another $1.5 billion or so in about 6 months. The first "installment" is matched by spending cuts that the parties have agreed upon. The second "installment" sill be met either by a reduction in the deficit agreed to by a Special Committee that will consider both spending cuts and revenue enhancement. If this Special Committee is unable to get a proposal through Congress, either there will be a vote on a balanced budget amendment or there will be automatic cuts in domestic spending. Fifty percent of those cuts will come from military spending, and the rest will come from payments to Medicare providers, education, and transportation. Social Security and Medicaid are exempt and will not be cut in this process.
I continue to agree with Paul Krugman, the NY Times columnist and Nobel Prize winning economist, who strongly believes that it's not smart to cut spending during a weak economy. Now's the time to pump money into the economy, not take it out. Deficits matter, for sure, but I'm terribly afraid that pulling federal dollars out of the economy may push us into another recession or worse.
What do you think?
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 legislative session is over. As you know, Connecticut became 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. We've met with the State about the insurance Exchange, as have insurance industry insiders, agents and brokers, and representatives of large and small business. The Office of Policy and Management is posting the results of all of the stakeholder meetings they've had here. You can read all the views there. Connecticut also passed a law prohibiting "step therapy" -- policies by insurers that require consumers to try less expensive meds before they can have what their doctor prescribed. That's the good news. The bad news is that the Governor vetoed a bill that would have allowed the Attorney General or Healthcare Advocate to request a hearing (called a symposium) whenever a health or long-term care insurer raises rates more than 10 percent. Rather than override the veto. our State Healthcare Advocate, the wonderful Vicki Veltri, worked out a deal with the Insurance Commissioner that will allow her to request up to 4 hearings per year on rate increases. The big down-side is that insurers will not be required to provide consumers with notice in advance of a rate increase. So it's up to you to stay informed. Rate filings are posted here. So keep an eye out, or trust Vicki Veltri -- who is most trustworthy -- to be keeping an eye out for all of us. And of course, you know about the budget debacle. The cuts to safety net programs, including Medicaid and group homes for the developmentally disabled, are severe. We still won't know how bad it's really going to be until the unions have completed their re-vote on the deal their leadership negotiated with the Governor. As always, it's always good to contact your State Senator or Representative and tell them how you feel about things. Your State
Most states are just about finished with their legislative sessions this year, as well. Laws outlawing "specialty tiers" for the most expensive drugs are still live in CA and NE. If you live in those states and you want to be able to afford your meds, contact your state legislators. We know that budget cutting has been threatening to result in major cuts in every state, and that seems universally to include Medicaid. I don't have a state-by-state analysis, but the Kaiser Family Foundation is a great resource on Medicaid. If you have questions about your state's Medicaid program, check them out. 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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