Many families dealing with Huntington's disease (HD) know too well that most of their community doctors know little about HD. But why do they know so little? The answer is quite straightforward: U.S. doctors get only a few hours of HD education over their entire 5 to 8 years of medical education and training. No wonder they have difficulty providing care for patients with this complex disease. This problem is huge because in any given year, the majority of HD patients get all of their medical care from doctors who have not been well educated. How can this problem be solved?

The Problem:

In late November, 2012, I learned more about current HD education in medical schools and training programs when I had the opportunity to direct a Continuing Education Course on HD for community doctors. The course coincided with the 2012 Huntington Study Group (HSG) meeting in Seattle, and utilized national and international HD experts as teachers. From them I learned that HD medical education for the general MD is no better than my personal (Internal Medicine) experience more than 30 years ago. And what surprised me more was that Neurology subspecialists usually get very few more hours, and Psychiatrists in training rarely get any.

How little HD training?

  • Medical School: Most often only 1-2 hours, mostly on biology and genetics of HD.
  • Internal Medicine or Family Practice residency training: At best only 1-2 hours, or (as in my case at Yale) no education.
  • Neurology residency training: Even here, only a few hours, unless the trainee specifically requests it. This is the case even in centers that have HD specific clinics.
  • Movement Disorder fellowship training: For many programs, this is still only a few hours, even in centers that have HD specific clinics.
  • Psychiatry fellowship training: Many programs offer no training in HD
  • Post Graduate Continuing Education: Hasn't been offered before 2010. It is hard to get doctors to attend a course on HD, including Movement Disorder Neurologists -- even when it is free.

This really wouldn't be a problem if all HD patients get care at specialty centers from HD trained doctors. However this general lack of education is a HUGE problem -- because the majority of patients are seen by community physicians -- who haven't been trained. In fact, the majority of HD patients are probably rarely, if ever seen at a specialty center.

Of course this doesn't mean that all HD medical care from generalists is inadequate. But it does mean that on average, a generalist needs to seek out and get HD specific education from other sources.

Where do HD patients get medical care?

  • HDSA reports: According to recent data, HDSA Center of Excellence (COE) sites see about 15% (assuming a 30,000 population) of U.S. HD patients. Though this number isn't known, non-COE HD centers probably see another 10%. For any given year, this means that 70% or more are seen only by physicians lacking knowledge in the care of HD patients. A significant fraction of these patients may be in later stages of disease when care needs are great and access to centers difficult.
  • Trialytics Inc. report: This company uses insurance data to identify how many individuals are seen with a specific medical problem within specific geographical areas. This type of analysis also can be used to identify doctors who use the HD diagnosis for insurance billing purposes. In a report prepared for CHDI, this company combined data for a 2-year period (2005 and 2006), and found that the majority of HD visits were to Internal Medicine and Family Practice physicians, and that these patients had not seen any neurologist during this time. Though many of the remaining HD patient visits included at least one to a Neurology physician, most were not HD specialists.

Bottom line: On a yearly basis, most HD patients get their care only from doctors who have little HD training.

Potential solutions:

  • Adding new HD specific centers: This is an important goal that is already in HDSA's strategic plan. However, this requires lots of $$$$ over the long-term because academic medical centers aren't interested in HD specific clinics without having additional outside financial support -- because it costs more to see an HD patient than can be recouped.
  • Increasing capacity of present clinics: For the same financial reasons, many existing centers can't expand without additional outside funding. This also requires more HD trained doctors.
  • Expanding the reach of HD clinics: This could be a cost effective solution by utilizing existing centers to proactively establish a network of community medical providers who are in turn made known to the patient community through HDSA chapters. Whether telemedicine or lower tech methods are utilized for such a program, this can't be done without additional funding for centers to cover technical and increased personnel costs.
  • Post Graduate Continuing Medical Education: HDSA was the first to provide this type of education and has directed a course for Neurology and Psychiatry specialists in 2010 (with funding from Lundbeck Inc.), and in 2012 provided an online course (funded by the Griffin Foundation and Lundbeck Inc.) for community primary care and neurology physicians. This course is ongoing and available on the HDSA website. HSG has also recognized the importance of continuing medical education and has provided this to HSG physician leaders during annual meetings for many years. And in 2012, HSG worked with the author and facilitated the development of an HD course (funded by the Griffin Foundation) for Neurologists and Primary Care providers to coincide with the HSG annual meeting in Seattle. This course is set to continue on an annual basis as part of the HSG annual meetings. A significant hurdle is creating interest from medical providers to access these continuing education courses.
  • Patient and Family Empowerment: This is of great importance for those patients getting care outside of HD specific centers. With patient/family knowledge -- applied tactfully -- comes power. At least in my experience, community medical providers really want to provide best care to HD patients. Your learning about and providing information from HDSA's Physicians Guide, or from available treatment guidelines for symptoms can help your local doctor provide better care. And let your doctor know about the HDSA online course.
  • Work with your local HDSA chapter and COE site: Find out how you can help extend the reach of your local chapters and HD clinic site. And as always, help raise funds to accomplish this goal.