Archive for August, 2010

Why I Chose A Concierge Medicine Practice

August 18th, 2010

I finally did it. Today I made the plunge and signed up for MDVIP, a so-called concierge or boutique medical practice. What drove me to that decision? Several factors. Becoming a more empowered patient, a more informed patient, I grew increasingly aware of the promise and potential of medicine practiced in a patient-centered fashion. Also, as a busy person the time spent in doctors’ offices and the time I was spending tracking down results and coordinating my care was more than I felt I should have to give to the process. When I went to schedule my last primary care visit and was given a date 3 months away I cracked. Straw meet camel’s back.

Now I can’t go without a primary care physician and with my cavalcade of conditions not just anyone would do. What were my choices? (1) Find another primary care physician who wasn’t, like my PCP, overbooked with patients and undersupported by technology; (2) Pay $2000 for an Executive Health Screening (at the same academic medical center no less) that offered convenient scheduling of a full day of all the tests and examinations I needed but still left me without a longterm relationship with a primary care physician; or (3) sign up with an MDVIP physician who, due to a strategically limited caseload of patients at $1500 a pop could offer the holy grail of true access. Access to a timely appointment, access to the doctor without waiting hours, access by email, and by phone in a timely matter, access to my health records and lab records.

Some may criticize me joining such a practice, akin to putting my kids in private school if I live in a bad school district instead of becoming head of the PTA. As the daughter of schoolteachers who gave a combined 72 years to improving education for others’ children while sending me to the best option for my growth, I say one can support the system of tomorrow without sacrificing to what it is today.

Many more criticize doctors who set up MDVIP practices. If you google MDVIP, a for-profit company based in Florida, as I did, you will find a host of links referring to MDVIP as a scam, a rip-off, for greedy doctors abandoning patients, etc. I say to my fellow patients — Stand down! Take a breath and think about it. Your doctor went to college, medical school, residency, fellowships to learn everything needed to treat you excellently. Unless their families were independently wealthy, they accrued large debt, and now you want them to save your life for the same amount of money that you pay your teenage babysitter. Come on be fair. You say, “but my doctor gives me lots of attention. Why should I pay extra for what I already am or what I should be getting?” Well then you are why the rest of us wait 2 hours. And your doctor is on his or her way to being a burnt out shell who will leave the profession in a few years. The first thing out of the doctor’s mouth when I went to visit the MDVIP practice was, “Under my former practice model I was pressured to spend increasingly less time with patients who had increasingly more problems. I couldn’t do for them what they and I both wanted to be able to do.” Sounds like just the type of doctor we all want.

The only real solution is more primary care physicians. Fully paid tuition, better reimbursement for preventive and coordinating services, and other supports for those who go into and stay in primary care would be one of the best investments this country could make to ensure true access to quality healthcare for all.

Primary Care Evaulation Chart MDVIP vs. Executive Health vs. PCP

Please Vote!!! Patient Advocacy 2.0

August 11th, 2010

Please Vote!!! Patient Advocacy 2.0
I really wanted to call my presentation Patient Advocacy in 3-D. See why.

I am very excited to have the potential to speak at the 18th annual SXSW® Interactive Festival. This unique forum challenges you to envision the future of innovative technology. Featuring five days of compelling presentations from the brightest minds in emerging media and scores of exciting networking events hosted by industry leaders, SXSW Interactive offers an unbeatable line up of special programs showcasing the best new websites, digital projects, wireless applications, video games and startup ideas the community has to offer. From hands-on training to big-picture analysis, SXSW Interactive has become the place to preview of what is unfolding in the world of creative technology. Join us March 2011 for the panels, the parties, the 14th Annual Interactive Awards, SXSW ScreenBurn, the SXSW Trade Show, SXSW Accelerator and, of course, the inspirational experience that only SXSW can deliver.

My presentation would ask and answer: How can we make patient advocacy more like Avatar? Why would we want to?

Thinking about patient participation in healthcare as an immersive 3-D experience instead of a flat 2-D social media experience can transform personal and public advocacy on health and healthcare delivery issues. Patients as makers of healthcare policy, rather than just commenters on the gaps, flaws, and dysfunctions in policy is the next stage of patient advocacy evolution.

• How has the aggregation of patient voices in online communities created platforms for advocacy?
• What is the difference between personal and public advocacy?
• How can we translate online activism into actual policy and systems change?
• What are the barriers, internal and external, to translation of healthcare 2.0 to healthcare 3-D?
• What opportunities are there for patient advocates to influence policy?
Please vote and please join me (fingers crossed) next March in Austin, TX!

My Birthday Wish: Patient-Centric Reimbursement

August 6th, 2010

Amy Bassano
Director of Hospital and Ambulatory Services
Centers for Medicare & Medicaid Services

RE: Calendar Year for New Clinical Laboratory Tests Payment Determinations
In Support of Cylex Request for Reconsideration of Crosswalk Decision for CPT Code 86352

From my testimony at the July 22, 2010 Public Meeting

Good morning, my name is Donna Cryer. Today is my 40th birthday. Transplantation works. 16 years ago I was the beneficiary of a very skillful surgical intervention. But I stand here today because of a complex regimen of immunosuppressive medications. I may not be able to stand here 16 years from today if appropriate reimbursement is not given to Cylex’s Immuknow.

Allow me to explain . . .
After graduating from Harvard and between my 1st and 2nd year of law school at Georgetown my body finally succumbed to more than a decade of autoimmune disease and I waited in intensive care for an organ I was eventually blessed to receive. Subsequently I served on staff as a patient affairs specialist at the united network for organ sharing and was invited back as a volunteer on the membership and professional standards committee. Currently I am a member of the board of directors of the American liver foundation and a patient representative to the U.S. Food and Drug Administration. I use Immuknow with my transplant team to manage my care.

I am here today representing myself and speaking in support of Cylex’s request for reconsideration.

I am here to remind us that what we discuss and decide here today are not abstract or academic issues but are life and death to patients like myself who rely on immunomodulation therapies and who rely on third party payors like Medicare & Medicaid to enable our access to approved and validated care.
My remarks will focus on the impact of inadequate reimbursement on patients in three areas: access, cost, and quality.

Inadequate reimbursement of immuknow may prove to be an absolute bar to patient access. Medicare, particularly through ESRD, covers such a large proportion of transplant recipients that hospitals simply will not be able to take on the burden of covering the loss for performing each test and patients will lose out on a unique and necessary tool for managing our complex immunosuppressive regimens.

No other current clinical decision support tool provides for early, actionable information so a clinician can intervene to prevent rejection not just deal with complications.
A personal example: my creatinine has been rising, indicating that the immunosuppressants may be having a nephrotoxic effect. The initial reaction from my physician was to lower my dosage, but because we also did an Immunknow test we saw that my immune system is highly reactive and we risked rejection if we reduced the dosage. We are working on other therapies to reduce the impact on my kidneys. Because I had access to this test, we were able to avert the need for rescue therapy, hospitalization, and possible graft loss.

No other current clinical decision support tool allows personalized treatment, so that an individual’s immune system is balanced with graft survival, risk of infection and long-term consequences.
My doctors did a great job of saving my life and my organ but because we did not have this tool early enough my creatinine is rising, I have osteoporosis and osteonecrosis from too much prednisone, and, these high heels notwithstanding, my orthopedist has told me I’ll need knee replacements. We can do better now. Let’s do better now.

According to a National Kidney Foundation analysis Medicare will pay on avg. $100k for the 1st year of transplant or retransplant, my 1st year costs were well upwards of $300,000 – to not pay the approximately $600 for a test that can avoid the need for retransplantation seems unwise to say the least.

Let’s be clear, current practice is to use gestalt, accompanied by proxies such as levels of Immunosuppression medication in the blood, enzymes, or if we’ve waited too late, biopsies to diagnose rejection.
Medicare spends an average of $17k per year/per recipient for medication after the 1st year. (which is 80% of costs under part b if transplant is eligible under Medicare) (NKF data)

Because Immunknow use allows for personalized therapy, patients have greater confidence in the treatment plan which promotes greater compliance thereby reducing adherence-related rejection and costs.
Immunknow use in some cases results in lower costs from reduced prescription expenditures or hospital admissions.


Finally, as a patient it is extremely difficult to trust the U.S. healthcare regulatory system or have confidence in emerging therapies if one agency will not support financially what another agency has defined as the precise method of performing a test to be clinically effective and valid. That is not high quality care; that is not evidence- based medicine. Inadequate reimbursement of Immuknow does not serve patients, the practice of medicine, or the healthcare system. It removes a critical tool for managing transplant recipients and loses sight of the scale and scope of other costs related to ESRD and transplantation in the absence of this assay.

I support Cylex’s request and ask that CMS please grant this request for reconsideration of the crosswalk decision for CPT Code 86352.
Thank you very much.

Disclosure note: I am a consultant to Cylex ( I asked to work with them because I believe in this test), but not paid for this testimony.