Sunday, January 18, 2009

reforming healthcare to make pain less invisible

When DBF and I were laid off at the beginning of November, one of our immediate first concerns was continuing to afford treatment for my Chronic Migraines. Any regular reader of my blog knows that I haven't yet found a successful treatment regimen to manage my Migraines, though I have been working hard for several years now.

I was very fortunate at my last job to have very good health insurance coverage. My former employer did not charge employees for the basic level of insurance (which included medical, dental and vision). Our prescription plan was only two-tier. Compared to many other chronic illness patients, I was incredibly fortunate to have such great coverage. Even still, it cost me hundreds of dollars a month out-of-pocket. Now, add the cost of my COBRA coverage, and a month's worth of unemployment checks just barely covers a month's worth of treatment costs.

It's no big secret that healthcare is in dire need of reform. Many of us particularly tied to the medical industry - whether we are healthcare providers, chronic illness patients or caregivers - perked up when soon-to-be President Obama emphasized the need for healthcare reform. Cynicism aside, it's reform our country desperately needs.

Before I go on, I do want to mention the importance of universal, affordable healthcare and an effective "cure" for the shortage of primary care physicians. These topics have been written about extensively across the blogosphere, so I won't dedicate much space to them here, other than to say that they are hugely important and difficult tasks to accomplish.

But, beyond these issues is another that cannot be ignored: effective treatment for chronic pain.

According to Rest Ministries, nearly one in two people in America live with chronic illness, and 96% of illness is invisible. Many of these chronic illnesses come with pain. Pain, by its very nature, is often impossible to ignore, extremely debilitating and invisible to those not experiencing it.

This invisibility is particularly problematic when it comes to medical treatment. A familiar story: a Migraineur who finds herself in Status Migrainous, after 72 hours of pain with no relief, dutifully goes to the ER to get the Migraine broken. She knows the increased risk of Stroke after a prolonged Migraine and, per her doctor's orders, goes to the ER. Despite her doctor's treatment protocol (well documented in her records), she is treated like a drug seeker and sent home without breaking the Migraine.

Unfortunately, it has fallen to Migraine (and other chronic pain patients) to address this problem. Teri Robert, a prominent advocate for Migraineurs, has developed and freely distributed a set of ER forms for Migraine patients, in an attempt to get around the dreaded drug seeker label. Many headache specialists will do what they can to help patients get around this obstacle to the care they desperately need. Yet Migraine support groups are full of stories of poor treatment at the ER.

Let me make it clear that I'm not blaming ER doctors for this very real issue. All too often, drug seekers do go to the ER to get narcotic hits. Because pain is invisible - at least in the case of most chronic illnesses - it's hard to tell just by looking at someone if they are, in fact, experiencing a severe pain flare. The drug addicts, DEA and "War on Drugs" have combined to put chronic pain patients in a difficult position. Doctors are reluctant to prescribe pain medications to patients who legitimately need them; those medications, if prescribed, are often underprescribed; and breakthrough pain is a very real problem that chronic pain patients dread. All too often, that puts us in the hands of ER doctors.

But what if it didn't have to be that way?

I ask the Obama administration to work with the healthcare industry to find a solution to these problems, specifically:
  1. Better treatments for Migraines and other chronic pain;
  2. Appropriate prescribing of existing and new treatments;
  3. Individual treatment protocols for patients to address breakthrough pain; and
  4. Access to necessary emergent care for breakthrough pain (and in the case of Migraines, Status Migrainous).
Not being a medical professional, I don't have good solutions to these problems. But I firmly believe that we have an unprecedented opportunity for doctors and patients to work together with the Obama administration to address these problems. More funding of the NIH for research into chronic conditions is an important first step. Beyond that, it is up to all of us with a stake in the medical industry to work together and develop a plan of action.

The skeptical side of me sees this much reform as impossible to achieve. But the optimistic side of me is reaching out to all of you. Patients can't do this alone. Doctors can't do this alone. Nurses can't do this alone. But together, just maybe, yes we can do it.


Be well,
MJ

6 comments:

Debbie said...

Hi, MJ
I agree with all you said, but I don't want to see socialzed medicine. I have a friend from England and she says the healthcare in England is terrible. Very long waits for procedures we see every day: MRIs, CAT scans, hip replacement surgery, chemo, and the list goes on. The same with Canada. Patients are coming to the US (Buffalo) to have surgery and don't want to wait 2 years.
Wendy told me that there is no choice in healthcare providers, either.

There has to be a better way.

Debbie

themigrainegirl said...

I'm showing my cards here and revealing that I haven't been reading your blog (or anyone's!) in the last few months--at least with any regularity. I didn't know you were laid off! How frustrating. Last time I had health insurance (early 2006), I still paid hundreds each month out of pocket. Have you looked into the prescription assistance programs? Those saved my LIFE (and saved me thousands at this point--I get my Imitrex and Maxalt for free!).

MaxJerz said...

Debbie, I agree with you that we don't want to trade our current healthcare system problems for those we see in countries with socialized medicine. I have to believe there's a better way, a middle ground perhaps, that can clean up the mess we have here now.

Migraine Girl, I haven't looked into the rx assistance programs too much, though most of my out-of-pocket cost these days is supplements prescribed by my herbalist (not covered by insurance) and co-pays for office visits. And the actual COBRA payment itself. It does still save me some money though. And I will look into those programs for the few prescriptions I do have.

Thanks to both of you for your comments!

Be well,
MJ

Barbara K. said...

Well said! I am staggered by the statistic that 1 out of 2 Americans has a chronic illness.

Megan Oltman said...

MJ this is so very well said! I don't have much to add but that this is a clear call to action and deserves to be listened to! I don't know if change.gov is still up or if things should now go to some White House web site, but I'd send it there if I were you!

MaxJerz said...

Barbara, I was also staggered by that statistic. I wouldn't be surprised if the number of patients with chronic illness soon becomes the majority, rather than the minority.

Megs, it looks like change.gov is no longer active, and it doesn't look like there's any equivalent on the new White House site. If you (or anyone else) happen across something similar, I'd be more than happy to submit this post!

Thanks for your comments!

Be well,
MJ