ACA Tax Money to Fund Cleveland-Based Research on Multiple Sclerosis Treatments

One of the provisions of the Affordable Care Act is the creation of the Patient-Centered Outcomes Research Institute (PCORI).  Beginning in 2012, fully-insured plan sponsors have been billed a fee of $1 per covered employee per year by their insurance carriers.  The insurance carriers have owned the responsibility of collecting the fees and paying the government accordingly whenever a plan sponsor is in a fully-insured arrangement.  The PCORI fee has escalated to $2.26 per employee per year in 2017.  Self-Insured plan sponsors are responsible for their own fee calculation and payment, due July 31 each year.  As you can imagine, these PCORI fees add up.  Have you ever wondered what happens to the money?

On September 12, 2017, the PCORI Board of Governors agreed to fund MS Research Studies totaling $38 Million.  $15.5M of that money will be spent in Cleveland, OH – $10.6M at Cleveland Clinic and $4.9M at Case Western Reserve University.  “These large-scale research awards should have a powerful impact for people with MS by answering critical real-world questions about treatment strategies and their effectiveness,” commented Bruce Bebo, Ph.D., Executive Vice President, Research, at the National MS Society.  PCORI Executive Director Joe Selby, MD, MPH said: “this research will help patients and clinicians address some of the difficult questions that arise with a disease that has a wide variety of symptoms, such as fatigue, pain, loss of vision and loss of coordination.”

The Cleveland Clinic project will compare an escalation strategy (patients start taking a less-powerful drug with the option of switching to a more-potent therapy if the drug is not adequate) with a more aggressive approach that begins with a stronger drug that is potentially more effective but also carries a greater risk for adverse effects.  The study will monitor patient-reported outcomes and use magnetic resonance imaging to measure changes in patients’ brain volume, a predictor of long-term disability that people with MS and their families consider very important.

The Case Western Reserve University project will focus on fatigue management.  Fatigue is a major factor for MS patients – about 90% experience fatigue.  This project will track the effectiveness of delivering fatigue-management education to patients via three different modes:  1) in-person instruction during medical visits, 2) teleconference (with the patient at his or her home) and 3) internet (with the patient at his or her home).  As non-traditional (telehealth) methods of treatment gain popularity, it will be interesting to see the results of non-traditional vs. traditional methods.

Congratulations to Cleveland Clinic and Case Western Reserve for capturing PCORI funding for these important studies.


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