Saturday, May 16, 2009

Types of HD Advocacy

One of my objectives in the "What is HD Advocacy" survey was to get a clear picture of the types of advocacy that were of concern to HD families. So far they break down as follows.

Family Services - This was the area of greatest concern to the most respondents. This wasn't unexpected because of the amount of pain associated dealing with unbelievable bureaucracy, anti-social behavior, and most often having a lack of information needed to cope well.

HD Awareness - We seem to have two opportunities in this category. The first is to make law enforcement professionals aware of the degree and nature of mental issues associated with HD so that they can deal with it appropriately. The other goal seems to set an environment where HD families can network with each other.

Political Advocacy - HDSA has already started doing some great work at the national level and if you haven't signed up to be an HDSA advocate you should do so, but there seems to be many individuals asking for leadership, guidance, and education for local advocacy. There are also many social service issues impacting the caregiver's ability to get appropriate care for the HD patient.

Medical Services - In my fantasy every physician is current with the latest HD research, knowledgeable about medications used to effectively treat HD symptoms, and listens carefully to both the HD patient and the caregiver. The physician and the neurologist work together as effectively as a SEAL commando unit. They can sign HD patients up for clinical trials at a moments’ notice. However, the one story that keeps being told over and over again is that the doctor doesn't hear the truth about what's going on because the doctor leaves the caregiver outside of the realm of patient care. Thus the doctor often doesn't hear the truth because the HD patient prefers to leave the doctor with the impression that he's doing very well even when it's not true.

Research - This used to be a big topic because HD patients were not seeing a coherent plan that moved us forward toward effective treatments. The plan that CHDI put forth mitigated a lot of the anxiety that HD families felt but HD families still need to know that their voices are being heard by researchers. We need to know that the researchers understand what's going on in HD families, and we want the researchers to know how much we appreciate their amazing efforts.

Fund Raising – Many HD family members would do a fund raiser if only they had someone to hold their hand through the first one and prepare them to do the next one on their own. HDSA can help in this area by insuring that the material and coaching is readily available.

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