When Robert Davis’ prescription medication money ran out weeks ago, he began rationing a life-sustaining $292,000-per-year drug he takes to treat his cystic fibrosis.
Tuesday, the suburban Houston man and father of two got a lifeline in the mail: a free 30-day supply of a newer, even more expensive triple-combination drug with an annual cost of $311,000.
The drug will bring him relief over the next month, but he’s uncertain what will happen next. Although the 50-year-old has Medicare prescription drug coverage, he can’t afford copays for it or other drugs he must take to stay healthy as he battles the life-shortening lung disorder.
Davis is among millions of Americans with chronic disease who struggle to pay medical bills even with robust Medicare benefits. More than one in three Medicare recipients with a serious illness say they spend all of their savings to pay for health care. And nearly one in four have been pressured by bill collectors, according to a study supported by the Commonwealth Fund.
As Democratic presidential candidates Elizabeth Warren, Bernie Sanders and others tout “Medicare for All” to change the nation’s expensive and inequitable health care system, some advocates warn the Medicare program is far from perfect for the elderly and disabled enrolled in it.
The word “Medicare” was mentioned 17 times during Wednesday night’s debate in the context of a national health plan or a public option people could purchase. However, there’s been little to no discussion among the candidates in debates about the actual status of the health program that covers about 60 million Americans.
One in two Democrats and Democrat-leaning independents want to hear more about how candidates’ plans would affect seniors on Medicare, making it the top health-related concern they’d like candidates to discuss, according to a Kaiser Family Foundation poll released Wednesday.
“We fear the debate about ‘Medicare for All’ is really missing the point,” says Judith Stein, director of the Center for Medicare Advocacy. “What most people don’t know is the current Medicare program has a lot of problems with it. We need to improve Medicare before it becomes a vehicle for a broad group of people.”
Medicare for All faces broad political challenges. About 53% support a national Medicare for All plan, but that support drops below 50% with more details about paying taxes to support a single-payer system, according to the Kaiser poll.
Nearly two in three moderate voters in Michigan, Minnesota, Pennsylvania and Wisconsin are skeptical of a plan to use Medicare as a vehicle for comprehensive health coverage, another Kaiser and Cook Political Report poll released this month shows. A group funded by pharmaceutical companies, health insurers and hospitals has lobbied against Medicare for All, and a survey released by health savings administrators reported participating employers oppose the plan.
This month, Warren released more details about her health plan, calling for a public option within the first 100 days of her presidency. She said it was not a retreat from Medicare for All, even as a Des Moines Register/CNN/Mediacom Iowa Poll showed her support in Iowa dropped to 16%.
Stephen Zuckerman is a health economist and co-director of the Urban Institute Health Policy Center. He says the Medicare for All proposals expand coverage beyond what Medicare beneficiaries get.
“If you hear about Medicare for All, you might think it’s the current Medicare program for all people,” Zuckerman said. “But that’s not what the Medicare for All proposals are presenting. They are looking at plans that are far more generous, in terms of the benefits they cover and to some extent the cost sharing.”
The fundamental promise of Medicare for All builds on a public program that works well for adults over 65 and people who are unable to work because of disability. Although Medicare rates high in satisfaction among most who have it, a portion of people who need frequent, expensive care struggle financially.
The Commonwealth Fund-supported survey of 742 Medicare beneficiaries reported 53% of those with “serious illness” had a problem paying a medical bill. The study defined serious illness as one requiring two or more hospital stays and three or more doctor visits over three years.
Among these seriously ill patients, the most common financial hardship involved medication. Nearly one in three people reported a serious problem paying for prescriptions. People had problems paying hospital, ambulance and emergency room bills, according to the survey.
Eric Schneider, a Commonwealth Fund senior vice president for policy and research, says the survey’s findings show seriously ill Medicare recipients face “significant financial exposure.
“The expectation is that people would be relatively well-covered under Medicare,” Schneider says. “We’re seeing it has gaps and holes, particularly considering the level of poverty many elderly still live in.”
‘More illness, more sickness’
Davis, the Houston-area man, has rationed expensive but critical modulator drugs, which seek to improve lung function by targeting defects caused by genetic mutations.
When he ran out of the drug Symdeko last November, he coughed up blood, had digestive problems and was hospitalized for a week. This month, he took half the amount he was prescribed, hoping he’d have enough pills to last through the year.
“It alters my breathing a lot,” Davis says. “I’m more congested. I start slowing down, more illness, more sickness.”
Davis has Medicare prescription coverage, but he couldn’t afford Symdeko’s $1,200 monthly copay. He needs to pay an additional $600 each month for a less expensive drug, pulmozyme, which breaks down and clears mucus from his lungs. The medication he takes is critical to keep his lungs functioning and to limit infections.
A private foundation offers copay assistance up to $15,000 each year, a threshold Davis reached this month. Like a year ago, as rent, food and utility bills took most of his disability income, the math didn’t work. He could no longer afford drugs when the foundation’s annual help ran out.
A 30-day supply of the newer drug, Trikafta, was provided by the drug’s manufacturer free of charge. Davis worries he will run into the same problem when he’s again forced to cover a copay he can’t afford.
His Medicare coverage is sufficient for doctor visits and hospital stays, but he says drug costs for cystic fibrosis patients are “out of control.”
“Research is expensive – I understand that,” Davis says. “They are making lifesaving drugs that very few cystic fibrosis patients can afford and that a lot of insurance plans will balk at.”
Vertex Pharmaceuticals, the company that makes Symdeko and Trikafta, says the drugs’ list prices are appropriate.
“Our CF medicines are the first and only medicines to treat the underlying cause of this devastating disease and the price of our medicines reflect the significant value they bring to patients,” the company says in a statement.
Vertex provides financial assistance to patients such as Davis who need the company’s medications.
“Our highest priority is making sure patients who need our medicines can get them,” the company says. “Every patient situation is different, and our (patient-assistance) team works individually with patients who are enrolled in the program to evaluate their specific situations and determine what assistance options are available.”
‘Public Medicare plan is withering’
Advocates such as Stein want presidential candidates to address Medicare’s coverage gaps and other challenges millions of beneficiaries face.
The Commonwealth Fund survey did not report whether participants had traditional Medicare plans or Medicare Advantage plans, which are administered by private insurance companies such as Aetna or UnitedHealthcare. The report did not ask participants whether they had supplemental insurance, which covers out-of-pocket medical expenses not capped by Medicare.
People on Medicare typically have robust coverage for hospital stays and doctor charges. But even with “Part D” prescription drug coverage, Davis and others who must take expensive drugs are responsible for copays.
“What is happening is the public Medicare program is withering,” Stein says. “The private, more expensive, less valuable Medicare Advantage program is being pumped up.”
More than one-third of Americans choose private Medicare plans, which entice consumers through add-on services such as vision and dental coverage and perks such as gym memberships. A survey commissioned by the Better Medicare Alliance, which is backed by the private insurance industry, reported 94% of people in private Medicare plans are satisfied with their coverage.
Private Medicare plans restrict the network of available doctors, hospitals and specialists people can see. Traditional Medicare plans allow people to see any doctor or hospital that takes Medicare.
Stein says tailored networks can be problematic for seniors who travel out of state and encounter a medical emergency.
She says private plans frequently change doctors and hospital networks from year to year. Such frequent network changes can surprise Medicare recipients and force them to switch doctors.
“There’s too much confusion, too little standardization,” Stein says. “The inability, when you are really ill or injured, to get the care where you want it and from whom you want it, I think that is completely lost in the discussion.”
This month, President Donald Trump signed an executive order “protecting and improving” Medicare, but some worry it could push more consumers into private plans and lead to more expensive medical bills. Among other things, the order calls for Medicare to pay rates closer to those paid by private insurers. Medicare typically pays doctors less than what private commercial plans pay.
The federal rules based on the executive order haven’t been finalized, so it’s unclear how it might be implemented.
The executive order “doesn’t seem all that well thought out,” Zuckerman says. Raising Medicare’s payment rates to be on par with private insurance would make the program more expensive and potentially financially vulnerable, he says.
“Public opinion wants to see that program preserved,” Zuckerman says. “At a minimum, I don’t think anyone wants to see Medicare contract.”