Dolores Reiss looked at me and pointed to my coffee cup.
“Need, need [unintelligible], more? More [unintelligible] you?”
Dolores was clearly grasping for a word. She tried again and succeeded.
“Co … coffee, you, more?”
She suffered from dementia, a disease that causes the gradual death of brain cells in the cerebral cortex, the area of the brain believed to be responsible for memory, action, thoughts and personality. Impaired speech is one of the symptoms.
“Anything over four letters, it’s iffy when she’s not in therapy,” said her husband, James. “You can tell her words like ‘go’ or ‘stop’ and she’ll get it. But when she’s not in therapy, her ability to grasp more complex words declines.”
Dolores also had a habit of repeating the last word or expression that someone else makes. She did it over 20 times in the space of an hour. She did that much less when she was in speech therapy.
“She gets pretty vocal as she has more therapy,” said James. “Her speech therapist said that she gets more involved in what you’re talking about the longer her therapy goes on.”
Dolores’s speech could have been much better year round. Her problem, though, is that she was a Medicare patient. Specifically, Medicare’s rules governing speech and other types of therapy only allowed her to receive therapy on an intermittent basis.
Medicare — Promises Not Kept
Today marks the 50th Anniversary of President Lyndon Johnson signing Medicare into law. Many on the political left will celebrate that. For example, Healthcare-NOW!, a group advocating on behalf of single-payer health care, is organizing many events across nation the in honor of the Medicare’s anniversary.
Yet the celebration of Medicare is unwarranted. Medicare has a dark underbelly that is seldom given much attention in the media. Certain patients, often the sickest, are harmed by Medicare’s policies. Grandiose promises were made when Medicare was signed into law. Yet, as the example of patients like Dolores makes clear, the program has failed to live up to its promises.
When President Johnson signed Medicare, he said, “No longer will older Americans be denied the healing miracle of modern medicine.” Yet Medicare denies treatment routinely, even when a physician recommends that treatment.
That is another thing Medicare was not supposed to do. The first part of the legislation, entitled “Prohibition Against Any Federal Interference,” makes a fairly explicit promise that Medicare would not interfere with the doctor-patient relationship. It states, “Nothing in this title shall be construed to authorize any federal office or employee to exercise any supervision or control over the practice of medicine.”
Physicians are ready sources of complaint about how Medicare interferes with their practice.
“Medicare won’t pay for a bone-density scan on a patient to check for osteoporosis unless the patient either has very specific risk factors or already has a diagnosis of osteoporosis,” said Dr. Juliette Madrigal-Dersch, a primary care physician near Austin, Texas.
The risk factors Medicare considers for osteoporosis are things like steroid usage or the patient takes a drug that causes osteoporosis as a side effect.
“The normal risk factors most doctors would use are advanced age, a small frame, family history, or history of a fracture,” Dr. Madrigal said. “But that’s not what Medicare uses. So, if you have a little 80-year-old lady who is all bent over and looks like her bones could break at any moment, you can’t order a bone-density scan on her, unless she already has a diagnosis for osteoporosis. But you can’t get that diagnosis without the bone-density scan. It’s a frustrating catch-22.”
For Dolores, her physician couldn’t prescribe year-round speech therapy for her due to Medicare’s “improvement standard.” Under this standard a patient must show that the therapy is causing his injury or illness to improve. If the patient stops showing improvement or has an illness that will not improve, Medicare won’t pay for therapy.
Medicare used the improvement standard almost as soon as it began paying for therapy in the late 1960s. And, back then, it may have made sense. But, over time, medical professionals often find that a treatment intended for a particular illness has multiple uses. Therapy is no exception. In the last 20 years or so, physicians and other medical providers have discovered that therapy can help slow the decline in patients with illnesses such as dementia or Multiple Sclerosis. But “slowing the decline” is not improvement.
Dolores would receive speech therapy, and her speech would improve. A few months in, it would hit a plateau, after which her therapy would be discontinued. Within a few months, her speech would decline, at which point there would be room for improvement again. Her physician would diagnose her and authorize more speech therapy. She would go back to therapy until she hit her plateau again.
For Clay Bell, the improvement standard left him paralyzed from the neck down. The Detroit-area resident was diagnosed with Multiple Sclerosis (MS) back in 2001. A few years later he applied for Social Security Disability Insurance, and about two years after that he went on Medicare.
MS is a neurological disorder that erodes the protective insulation in the nerves surrounding the brain and spinal cord. As the disease progresses, patients experience symptoms such as numbness, muscle spasticity, tremors, impaired mobility, chronic pain, and swallowing disorders.
Clay had the worst kind of MS, primary-progressive. In some other types of MS, patients experience periods of recovery. There are no such recovery periods with primary-progressive MS. About 10 percent of MS sufferers have primary progressive. “I hit the lottery,” Clay joked.
For someone like Clay who is suffering from primary-progressive, physical therapy can improve movement and help relieve pain, improving the MS patient’s independence and quality of life. Clay’s physical therapy continued as long as he showed some improvement in his ability to move when compared to his initial evaluation. But with a degenerative disease like MS, that wouldn’t continue forever. In early 2008, his physical therapists discontinued his therapy for the first time.
In the next year, Clay lost muscle tone, the ability to walk, and much of the movement in his arms. In 2009, Clay’s neurologist wrote him another prescription for physical therapy in a last ditch attempt to save some of his mobility. But Clay showed no improvement. After a few weeks his physical therapy was stopped for the last time.
“I was pissed,” Clay said, his usually weak voice rising slightly in volume. “I felt like a number they just threw away. They’re supposed to help people. I saw a lot of people who’d had strokes [at the physical therapy center]. They’d just release them and say there was nothing else they could do for them. And then it was my turn. I thought these people were there to help me. Instead, they turned on me.
“I know it’s not their fault. But I just felt somebody could help me. Therapy may have prolonged my movement.”
Too Small, Too Sick
It is often the sickest patients who suffer under Medicare because they are the most likely to lack political power. Specifically, they lack the ability to compel Congress to change Medicare.
For starters, relatively few people get seriously ill each, too few to have much impact on congressional elections. Clay was one of, at most, 60,000 people who fall ill with primary-progressive MS. That is too small a number to have any impact across 435 House elections and 100 Senate elections.
There are about 5.4 million people who suffer from Alzheimer’s, one type of dementia. That might be enough to impact some elections, but obviously people like Dolores are in no mental state to engage in political activity. Indeed, few sick people are in any condition to be organizing, protesting, garnering media coverage and doing other things that can get the attention of Congress to make changes in Medicare policy.
A final political handicap of those who are seriously ill is that they may not be around much longer. Unless you are from Chicago, your vote doesn’t count when you are dead.
Medicare’s improvement standard might have never changed had the Center for Medicare Advocacy not filed a lawsuit against it. The Center contended that the improvement standard was not based in any law or regulation, but was merely a rule that Medicare had adopted over time. Apparently some attorneys at the Centers for Medicare & Medicaid Services decided that the lawsuit was correct, and, starting in 2012, Medicare began paying for speech and physical therapy that is based on the patient’s need for skilled care.
That helped Dolores briefly before she passed away in early 2015. It came too late for Clay Bell. People in Clay’s condition are highly susceptible to pneumonia. He’d been hospitalized for it three times prior to 2012. That year he had his fourth bout from which he didn’t recover. If Clay had been able to continue his physical therapy, would it have prolonged his ability to move, thereby extending his life? Sadly we’ll never know.
We also will never know exactly how many MS or dementia patients would have been helped by therapy and never received it in the years before Medicare discarded the improvement standard. But the number likely runs in the millions.
What we can be sure of is the medical community will eventually discover another treatment that can help a group of Medicare beneficiaries that Medicare doesn’t pay for. And, if that group is too small and too ill to wield sufficient political clout, chances are slim Medicare will change its payment policy. Given the way Medicare functions, that scenario is almost inevitable.
David Hogberg is a senior fellow at the National Center for Public Policy Research. Parts of this article are excerpted from his new book Medicare’s Victims: How the U.S. Government’s Largest Health Care Programs Harms Patients and Impairs Physicians.