State Rep. Rod Hamilton was diagnosed with multiple sclerosis more than 20 years ago but is serving his seventh term in the Legislature, managing the workload while battling severe pain, a bout of temporary blindness and exhaustion.
"I thought my whole life was over. Little did I know, it was only just about to begin," he said about his diagnosis in a recent interview.
Hamilton, a Mountain Lake Republican, takes a drug called armodafinil to relieve his fatigue. But last year a "pharmacy benefit manager" — a consultant tasked by insurance companies with cutting drug costs — told him he could only take one per day instead of the two his Mayo Clinic doctor recommended. Hamilton said that even though he pays the full $37.07 per month, his pharmacy can only dole out what the benefit manager allows.
"What's the outcome? I'm in a wheelchair," Hamilton said, pointing at the device he uses to get around the Capitol. He said a year ago, with the drug and a regimented schedule of work and exercise, he was climbing four flights of stairs to his office. But no longer.
Hamilton is proposing legislation that would curtail the ability of pharmacy benefit managers, or PBMs, to change a patient's drug treatments in an attempt to protect the relationship between doctor and patient. Thus far, he has been unable to get a hearing on the bill from his House GOP colleagues.
Hamilton and his allies in the medical community are meeting fierce resistance as both Minnesota and the United States grapple with drug costs and a health insurance system facing volatility as Republicans try to replace the Affordable Care Act in Washington and MNsure in Minnesota. More than 22 percent of all health insurance spending now goes to drugs, according to America's Health Insurance Plans, an industry trade group. That's more than hospitals, doctors or any other single health cost. While other medical costs have stabilized some in recent years, drug prices have gone up by double digits for several years in a row.
Pharmacy benefit managers, little known to the general public but important players in health care, have stepped into the American medical bazaar as lucrative middlemen. The biggest firm has revenue of more than $100 billion per year.
PBMs help insurance companies negotiate with drug companies for discounts while also approving the drugs for insurance policyholders.
"It's about safe, effective and affordable," said Jim Schowalter, CEO of the Minnesota Council of Health Plans.
Because many patients see multiple specialists who may each prescribe a different drug, the PBM makes sure the drugs work together and do not cause adverse interactions that can make patients sicker or even kill them.
"Drugs have dangerous side effects, and they can interact badly, and physicians don't always have that information. Health insurers and PBMs have a comprehensive view," Schowalter said.
The drug approval process also forces patients to be in touch with their doctor, who can make sure they are keeping up with their care, Schowalter said.
With flexibility to change the drugs available to patients — known as the formulary — the PBMs are often moving patients from name brand to generic drugs, achieving savings of 50 percent or more.
Express Scripts, one of the largest of the PBMs, saved insurance companies and other clients about $5 billion during the past four years with its management of the formulary, said Brian Henry, a company spokesman.
And, in health care, saving money can mean saving lives, industry defenders say. For instance, PBMs found a viable alternative to a highly advanced and effective hepatitis C drug that was also notorious for a much-commented-on sticker price of $1,000 per pill. By driving down costs, PBMs are helping millions of hepatitis C patients.
PBM and insurance companies say problems that arise from changes to drug cocktails can always be corrected with an appeals process that is quickening with the help of new technology.
For Hamilton and his allies, however, the PBMs represent a dangerous incursion into a relationship as intimate as any — between doctor and patient.
The legislation is backed by a wide array of doctors and health care groups that say they spend costly time dealing with PBMs to authorize medicines. Psychiatric patients who struggle for years to find the right drug combination are especially vulnerable to changes in their medication.
The bill passed with bipartisan votes out of a Senate committee last week. Thus far, however, Hamilton has been unable to get a hearing in the House Commerce Committee, where it has landed.
Rep. Joe Hoppe, R-Chaska, chairman of the committee, said the bill would increase the cost of health insurance at a time of rising rates and is not paid for, so he sees no reason to give it a hearing. The bill would not apply to public programs like Medical Assistance and MinnesotaCare, which would limit its cost to the government to about $3 million during the next two years, according to an estimate by the state budget office.
Hamilton said he is well positioned to understand the struggles of patients.
"When you walk — or roll — in someone else's shoes, you look at everything a little differently," he said.