General

July is still new and on this Friday of a long holiday weekend with the sun shining, the cool breeze blowing, and a beautiful day in our neighborhood, I am inspired to blog, baby, blog.

My hope in this daily, brief, blog is to offer insight, lessons learned, and struggles ongoing in the day-to-day of this advocate.  I invite you to read and reflect and to respond.

As another state budget season comes to a close, albeit, a long and drawn out conclusion that awaits the governor’s signature and the end of some last minute partisan bickering; the first advocacy lesson learned is the need to show up and keep showing up.

Lesson #1:  95% of advocacy is showing up.  It’s being present and being constant and remaining when everyone else would have expected you to go home already. Stay.

I applaud each and everyone who in these last couple of months signed a post-card and asked others to sign; who called their elected officials and kept making calls; who visited a legislator’s office and added their pretty faces and powerful stories as the “WHY” behind the issue; who made signs and chanted and cheered at the rally. 

 The issue of showing up and staying is an appropriate first lesson on this July 2nd for on this date in 1964 the Civil Rights Act was signed into law.  Talk about a long, hard journey…..

Fellow advocates, journey with me.  When we are together, the staying in the battle, seems, somehow, easier to do.

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With funding streams drying up and everyone looking toward the impact of national health care reform, adultBasic is set to expire at the end of 2010 and it almost seems as if no one is paying attention.

Since 2002, Pennsylvania has run a state-subsidized health insurance program called adultBasic.  The program allows uninsured adults ages 19-65 that meet certain criteria to apply for a low cost health insurance option enabling them to receive basic health care.  The program is not perfect and the coverage it provides is not fully comprehensive, but since its formation, adultBasic has helped thousands of Pennsylvanians access the health care system and get some of the care that they need.

The main requirements for this program are that these individuals have an income, are not eligible for Medicaid, and are uninsured.  People must then take it upon themselves to fill out the application and join the wait list that has formed until they receive the state subsidy.  The fact that the 45,927 people now enrolled have met the eligibility guidelines and gone through the application process is surprising in and of itself.

What  is even more troubling than the number of people on the program is the wait list that has developed as a result of increased demand and insufficient funding.  As of June 2010 there were 397,671 Pennsylvanians on this waitlist.  That number is staggering.  That means that for every person actually enrolled in the program there are nearly 10 people waiting to get on themselves.  Also, to put this in perspective, when I began my job at Consumer Health Coalition just over two years ago in June of 2008 the waitlist was just over 96,000.

The passing of the Patient Protection and Affordable Care Act (PPACA) was a monumental achievement and an important step towards making sure Americans will have the access to the health services that they deserve.  With that said, adultBasic and other similar programs should be a bridge until the other components of health care reform are put into place.  We should not pull the rug out from underneath the thousands of working Pennsylvanians relying on the program, leaving them with the possibility of waiting years until other options are in place.  Our legislators should find a solution to make sure adultBasic survives this year and into the near future until other reforms are up and running.

Click here to download a PDF of adultBasic numbers over the last two years.

The idea of a “Patient Centered Medical Home” seems to be referenced constantly within the health care quality world.  There’s discussion of whether or not it will work, how it will be implemented, what the cost will be and so on.  All of this happens while patients by and large have no idea what the term is and what a system that embodies this idea would mean for them.

In a Patient Centered Medical Home (PCMH) a patient would have better coordinated services by using their primary care provider as a sort of “one-stop-shop” for all of their medical needs.  Some might argue that this is done to a certain extent already, but in a PCMH model patients would receive even greater attention from their primary care practice in the form of improved chronic care management, increased access to services, and better communication.  All of these things seem like they would be wins for patients and I think that if most people knew that this was the kind of system we were heading towards they would be pleased.  However, it’s not going to be an easy transition for a number of reasons.

For starters, we’ve got a fairly complex and, at times, surprisingly fragmented health care system where physicians, specialists, pharmacists, hospitals, and insurance companies are communicating with one another using an antiquated system.  Although easing this burden is precisely one of the goals of the PCMH model and the increased funding for electronic medical records, it is not going to be an easy transition.

I’ve also heard many experts acknowledge that there is a problem with the name itself.  As a society we’ve tried to soften ideas in the past with the “Home” title.  “Nursing home” and “funeral home” are two that spring to mind for most.  Thankfully though, the phrase “Patient Centered Medical Home” is just that, a phrase.  The concept should still ring true for consumers and providers alike once experts begin to articulate the benefits of a system such as this.

We are lucky to be in a state like Pennsylvania that is currently leading the way in advancing a patient-centered model like the one outlined here.  Through a state-run commission, we have been able to bring together consumer organizations, medical societies, public and private insurers, hospitals, and individual primary care practices to have a dialogue and work through the necessary changes and overcome potential barriers.  However, The Chronic Care Commission as it has been referred to, is set to expire this year unless legislators realize the potential cost savings and improvement at stake and reauthorize the program.  In an upcoming entry I’ll attempt to outline some of the work of the Commission and discuss the benefits of such a program for patients.

In the meantime if you’d like for information please visit:

The Pennsylvania Campaign for Better Care Webpage

Title: “There’s No Place Like Home” State Budget Rally!
Location: Roberto Clemente Memorial Park (Corner of Art Rooney Ave. and N. Shore Dr. – Near the site of the Mr. Rogers Statue)
Description: Join us for our annual state budget rally to make sure that home and community based services receive adequate funding in the PA State Budget. We all know that the budget battle is in full swing and we need to be sure that our legislators hear loud and clear that the Pittsburgh community supports these programs and services!
PA State Budget Rally Flyer
Start Time: 12:00
Date: 2010-06-25
End Time: 12:45

The experience of caring for a loved one such as a parent or grandparent is something that many people share.  Depending on the situation this can be an especially difficult time and unfortunately, navigating the health care system can be a big contributor to this.

What might be surprising to some is that many providers such as physicians and nurses acknowledge this as well.  They know that for all of their efforts, the way that our health care system works makes it hard to achieve the results they want while keeping the patient and their family involved.  Below is a comment from Dr. Christine Arenson that I think accurately illustrates some of the shared frustrations of those that know the health care system best:

“As a practicing family physician and geriatrician, I work daily with patients from across the economic spectrum, for whom the best, evidence-based self-management and chronic care support simply DOES NOT exist.  This is the case even for those who are not relying exclusively on public programs and are able to pay for these services themselves.   I also see the waste and unaligned incentives which so often lead to poor care and bad outcomes.

Furthermore, as a physician educator working with my team to teach and implement some of the proven strategies around improving geriatric care, I face the up-hill battle of convincing my students that there is a better way to practice and to impact the lives of their patients. Too often, they see our work as unrealistic and impossible in the “real world” of health care as it is currently practiced in America.

In order for my profession to provide more coordinated, patient-centered care, the incentives in our system need to be such that they actually support the use of evidence-based treatment.  This is in contrast to our current system that simply encourages providers to order more procedures and prescribe more medications. We must be able to engage patients in self-management support, education, and behavior change strategies with proven efficacy, and we need greater ability to test and disseminate practice-based interdisciplinary team-care to learn how to realize the true potential of the patient-centered medical home.”