Huntington's care provided by Huntington Study Group (HSG) professionals and Huntington's Disease Society of America (HDSA) is almost exclusively limited to specialty centers. This is exactly what our fund-raising and federal research dollars support: Expert medical care and social service support given by Centers of Excellence. This is all well and good, but . .

What about families -- who probably represent the majority of Huntington's patients worldwide -- who don't have a center within geographic reach? What about those families whose medical care and support services are all too often poor to non-existent? Do our Huntington's organizations believe that responsibility for care ends at the center's door?

The Center-centric approach to Huntington's care

Outside of the large cities with academic centers, where do Huntington's families get care? Does their local medical care and support services meet their needs? The sad fact is that Huntington families and expert Huntington doctors agree that care outside of centers is poor. Why poor care?

There are many reasons that Huntington's care is often poor outside of centers. It is a rare disease, which means that the majority of doctors have not seen a Huntington's patient and have received very little teaching regarding treatments and care for those with this disease. To make this situation worse, there are no practice parameters or medical guidelines (a medical guideline is similar to a recipe for best medical care) for Huntington's. If these local doctors can find no guidelines for treatment, why are we surprised that they believe, and tell their patients that Huntington's is untreatable.

And worse, this "why bother, it's untreatable" attitude extends to more than inadequate medical care. Huntington's families outside of specialty centers struggle alone, with little or no social support and no guidance on how to access services that are so badly needed.

And further adding to this tragedy, those families distant from centers have no realistic opportunity to participate in clinical trials for new drugs that could bring treatment advances to them and all who suffer from Huntington's disease.

Some signs of change

Huntington Treatment Guidelines: In a process beginning more than 3 years ago, doctors from the Huntington Study Group and the European Huntington's Disease Network are working together to establish treatment guidelines (the recipes for treatment) for Huntington's. The first stage of drug treatment guidelines for Huntington symptoms should be available by early 2010. Other groups are working on guidelines for physical and occupational therapy.

These treatment guidelines will be made available to general doctors and families so that doctors distant from centers will know how the experts treat Huntington's.

Virtual Centers: Another new and exciting way to extend expert care beyond specialty centers is to take advantage of new electronic technologies that allow sound and video picture interaction between a specialty physician and a distant patient and their general physician. For example:

  • In Durham, North Carolina: Using a newly established virtual care center, Dr. Mary Edmondson and team from The North Carolina Center for the Care of Huntington's Disease (NC-CCHD) can provide knowledgeable medical care to Huntington's families who are too distant to make the trip to her office at Duke University Medical Center.
  • In another model, Dr. Mark Guttman from Toronto spends a week or two a year visiting Huntington's patients in the distant North of his Canadian province, then video-consults with them and their local doctors at other times of the year when his expert advice is needed.
  • In a effort led by support group leader Ted Ross, At the University of Illinois Medical College at Rockford, Illinois, Huntington's families from this rural area of the state will be able to consult with Dr. Kathleen Shannon, director of the Center of Excellence at Rush University in Chicago via a television hook-up.

Now that it is technically feasible, it is time to extend Huntington's care and clinical research programs to families outside of centers. HSG and HDSA organizations should take bold action and require, or at least encourage, their funded centers to incorporate virtual consulting programs. That way the medical and social service needs of those in distant areas can be better provided.

Or we can turn a deaf ear . .