I often get on a soapbox regarding the complexities of trying to give good care to headache sufferers. The first obstacle is the fact that, at least at the level we deal with, it is a dreadful illness that is hard to treat to start with. The research is moving ahead at a snail’s pace. However, beyond that, there are major obstacles that are man-made and are moving care in the opposite direction.
I have been a headache specialist for 35 years. The care that we offer patients today is substantially worse now than it was a decade ago, and this is due to policy-makers (government and industries of health care insurance and pharmaceutical pricing). I will try to put this in a nutshell. I will also try to make it practical for patients.
On my desk this morning was a stack of charts, all with attached (form) letters from insurance companies telling me that they would not approve the treatments that I have ordered. This is after I spent a few hours reviewing chart notes and writing letters of support. I never just pull a treatment out of the air. I think deeply and holistically about a patient and try to make a tailor-made treatment just for them. Then, after all of that mental effort, it is disheartening to have an insurance company make the decision that it is not appropriate for that patient (what they really mean is that they don’t understand the treatment and want to save themselves money so they deny it). I had a patient this morning who has had severe daily headache since January. Her insurance company has rejected the last six treatment plans I have made for her and she is still suffering.
If we lived in a good world—doesn’t have to be a “perfect world”—the policy makers would seek and receive advice from experts in headache treatments and who could help them write good policies that give the best care.
The treatments that I recommended—and were denied—above, would all have been supported by every headache specialists in the country. However, government and insurance companies don’t seek advice for their policies from headache experts. They will have advisers who are MDs (maybe a retired pediatrician) advise them on policies. The very best will have a neurologist. However, most headache specialists, even those who are neurologists, will tell you, that if you have not had specialty training in headache medicine, neurologists really don’t know much more about headache treatment than a general family practice provider.
Patients are given the impression, by the insurance companies that they are not paying for things that are not standard. What they are really doing is not paying for things that they don’t understand, and their understanding is at the 1985 level of care.
Going forward, policy-makers are going to impose even a greater restriction on care. The government is now working on the next part of the Affordable Care Act aka “Obamacare.” Congress has, rightly, demanded that Medicare dollars (and the commercial insurers will follow Medicare’s plan) be spent on quality outcomes. The problem comes in how you measure those out comes.
The simplest outcome would be patient satisfaction. This would work well in other service industries. The problem in health care is that the best health outcome is not, necessarily, what makes patients the happiest. The best example is in narcotic acquisition. We have an epidemic of prescription narcotic abuse in the country right now. If you paid providers simply on how happy their patients were with their care (as indicated on a government survey), then the addicted would demand a huge supply of narcotics and if the provider did not comply, the patient would fill out the survey in a negative way and the provider would be punished. Some patients would be happier if we told them they needed to smoke more cigarettes, exercise less and eat more Twinkies. So, patient satisfaction is going to be only one of a long list of value points for the new payment system.
Here is where we need to be concerned. The government is now writing the value points of measurement for future payments to health care providers. Once again, headache sufferers have been dealt a serious blow. Of the team writing the headache care-specific plan, there is only one headache specialist. He is a good guy and knows financial policy well. However, I am very afraid that the ignorance of the other people will control the plan. All team members should be headache specialist, not one out of twenty.
Some of the ideas being floated are paying the providers based on how few narcotics and triptans they prescribe. Is this really a measurement of better care? Our patients need many more triptans than those in primary care. So if a patient comes to see us (with serve daily headaches) and we are able to reduce the number of headache days by 80%, but prescribe them more triptans, we will not get paid for seeing those patients. Measuring the days of headache (fewer the better) and fewer days of missing social functions or work are not included at this juncture. Sometimes there is a place for narcotics in good headache management, but if we prescribe them in the future (keeping the patient out of the expensive ER and helping them to miss less work) we will be punished financially.
It would be naïve of all of us to think that headache specialist would not alter their way of treating patients based on financial interest. It is already happening. I created the Pacific Rim Headache Center as a patient-centered practice. This meant that everything we did was targeted on making the patient’s quality of life better. Because of that, we were severely punished by insurance companies and eventually had to close because we could not get paid. I had other headache specialists advising me, at the time, that I should be doing more procedures that insurance companies do pay for, but which we both knew never worked. It would put the patient at risk, give them false expectations, but the insurance companies (who, as I have said, still work from the 1980s data) would cover. We refused to do that and it made our survival impossible. We are able to survive now better as part of a larger neurological clinic because insurance companies recognize neurological disorder, even if they don’t recognize headache disorders.
WHAT CAN THE PATIENT DO?
I have called and written our congressman and senators many times. If enough people write them, they might actually read one of the letters. Share your story and demand that board certified headache specialists would be consulted on every headache care decision, not just neurologists. Would they have a primary care provider making all their cancer treatment decisions? I hope not. But headache patients are invisible to them and these patients deserve better.
When you are given the opportunity to sign up for a new insurance, ask them if they have a board certified headache specialist or specialists writing their policies. They will say yes, but none of them do. I remember in the 1980s a few of them coming to my previous boss, Dr. Joel Saper, asking for direction. But not anymore. When they say they do, insist on the name or at least the credentials of the people making headache care decisions for the company. I have met with top insurance executives and they were not even aware that headache medicine was a specialty. As I said earlier, the very best ones will give you the name of a neurologist or pain doctor. Neither of these know more than the very basics about headache care. The pain doctors will recommend treatments that are very expensive, invasive and the studies stay they don’t work.
Off the soapbox now. Sorry about typos but once again I didn’t have the luxury of proof-reading.