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Published on May 14, 2019

A voice for vulnerable patients

A voice for vulnerable patients

For the past several years, Hyannis neurologist Michael Markowski, DO, FANN, has been regularly traveling to Washington, D. C., to advocate for patient care. He is currently the vice chairperson of the Government Relations Committee of the American Academy of Neurology and has developed working relationships with Sen. Elizabeth Warren, Sen. Ed Markey, and especially U.S. Rep. Bill Keating who, he said, has been an excellent advocate for patients over the years.

Dr. Markowski in D.C.Early on in his patient advocacy work, Dr. Markowski overheard a prominent senator say that numbers and statistics can be numbing but patient stories can be incredibly compelling.

“That’s why I go to Washington,” he said. “I’m there to share my patients’ stories for the patients who can’t attend.”

In February, Dr. Markowski, who practices at Neurologists of Cape Cod in Hyannis, joined six other neurologists from Massachusetts and 214 neurologists from 48 states to attend an event called Neurology on the Hill. The neurologists collectively attend 295 congressional meetings to advocate for better care for their patients.

“Of the utmost importance to me is the cost of prescription medications,” Dr. Markowski said. “When I started my practice over 14 years ago, I spent the majority of the day during office visits speaking about patient symptoms and how to treat their diseases. Now the majority of many office visits every day is spent discussing the cost of their prescription medications.”

Some of his patients or their spouses are working long past retirement age just to afford their medications. Some patients report having to choose between buying groceries and paying for prescriptions.

“Unfortunately, some of the most expensive medications available treat neurological diseases,” he said. “As neurologists, we treat chronic and very complex conditions which are often incurable.”

Lack of Access to Drugs

One example is medication to treat multiple sclerosis, which is a disease that many Cape Cod patients suffer from. Medications, even generic ones, that used to cost about $15,000 a year now cost over $60,000 a year.

“In some cases, pharmaceutical companies have increased the price of generic medications a thousand percent, because there is no regulation,” Dr. Markowski said. “What good are some of these wonderful, life-changing medications if our patients don’t have access to them due to increasing prices?”

Another abuse of the cost of prescriptions, according to Dr. Markowski, is the medication Nusinersen, the first FDA approved medication for spinal muscular atrophy, which is an infantile disease causing symptoms similar to ALS (“Lou Gehrig’s disease”). The disease typically causes progressive paralysis and death during childhood, but the new medication may significantly prolong life. Unfortunately, the cost is a barrier for the families of most patients who need it, he said. Treatment costs are $750,000 for the first year and $400,000 for every consecutive year.

“We have hope for the first time for patients with this horrible disease, and they have no access to this medication,” Dr. Markowski said.

To put the costs into perspective, he points to research that has shown that in 2013, Medicare paid nearly as much for one neurological drug, Glatiramer acetate as they paid for all office visits performed by neurologists The cost of this medication, Copaxone, increased 84 percent between 2010 and 2015. The monthly cost of this medication is 287 percent more expensive in the U.S. as it is in Switzerland and five times higher than it is in England.

“I find it shocking that the cost of a single medication to treat one neurological disease cost Medicare as much in one year as all office visits to all neurologists across the country,” he said. “This is a perfect example regarding the exorbitant cost of prescription drugs and its burden on our healthcare system.”

Another related issue that is important to Dr. Markowski and his fellow physicians is insurance-mandated step therapy, which is a downstream consequence of the high costs of medications.

“Step therapy is a perfect example of insurance companies trying to play doctor due to the high cost of medications,” he said. “This is also known as fail-first therapy.”

In fail-first therapy, doctors prescribe their preferred medication for their patient and an insurance company then will demand an alternate medication be given first. Doctors get frustrated because they are forced to prescribe medications which are not their first choice for the patient, due to side effects or prior lack of effectiveness.

“A very sad truth that has become increasingly clear to me in my almost 15 years of practice is that doctors have become relatively powerless. We have lost the authority to choose the best medication for our patient. We’re powerless to choose the preferred diagnostic test for our patient or the preferred laboratory test for our patient, because at any point the insurance can step in and say no.

“I am hopeful that with continued advocacy at the state and national level, physicians can regain some authority and have the ability to provide patient care without these insurance-mandated barriers.”

E/M Code Changes

A third issue that Dr. Markowski and his colleagues addressed in Washington in February is neurologists’ opposition to the Centers for Medicare & Medicaid Services (CMS) changes to the Evaluation & Management codes (E/M codes), which doctors use for most office visits. The five E/M codes have been unchanged since 1997, until July 2017, when the CMS proposed to decrease the number of codes down from five to two.

This significantly devalues the time doctors spend with patients with complex issues such as neurological diseases, cancer or complex cardiac conditions. Even though it is a budget neutral proposal meaning it won’t save any money for the health care system, the consequences for patients are huge.

It means that whether a patient sees a physician for ten minutes for a sore throat or an hour for a severe incurable brain disease or terminal cancer, both patient visits will be valued the same by Medicare. Reductions in these codes could force physicians to spend less time with patients, especially those with complex conditions. This could lead to multiple visits with doctors rather than the ability to spend the needed hour with a patient to care for all of their concerns, which is not what doctors or patients want.

The final thing that came out of Neurology on the Hill was a call for more funding for the National Institute of Health (NIH) research. More research is critically needed if we are going to be able to address the tsunami that is expected to hit our healthcare system in the near future as the population continues to age.

Consider the following facts about how one neurological disease can potentially bankrupt our healthcare system:

  • An estimated 5.4 million Americans had Alzheimer’s disease in 2012, including currently an estimated 15,000 people on Cape Cod.
  • An estimated 16 million people are expected to have Alzheimer’s disease by 2050.
  • Alzheimer’s disease accounts for 70 percent of the cases of dementia in the U.S.
  • In 2009, Alzheimer’s disease was the fifth leading cause of death for adults over age 65,
  • Medicare and Medicaid spending on people with Alzheimer’s disease totaled $130 billion in 2011; this figure could rise to $1.1 trillion by 2050.

“We know that we need to invest in research and better diagnostic tools and better treatments and hopefully a cure over the next several years or this one disease has the ability to bankrupt our entire health care system,” Dr. Markowski said.

Photo: Dr. Markwoski and son, with U.S. Rep. William Keating