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.

Results of HD Advocacy Poll

I conducted an informal poll on a few sites. Although I haven't assimilated the information nor even added my own thoughts to the list, I thought I'd take the liberty of publishing a summary of what I received. Feel free to add your own ideas as a comment to this post. Or add them to the thread on,53365. I'll be providing the requests in some fashion to HDSA.

Family Services

  • HDSA should offer more comprehensive services such as the Muscular Dystrophy Association does (

  • Internet support services

  • Assistance with social security, insurance applications to insure that families are providing the information needed to do it right the first time.

  • Speaking out for the rights of those who cannot or are too shy to do so.

  • Assistance with locating nursing homes and care facilities that will take HD patients. Finding “Medicaid” beds for HD patients is a particularly onerous problem.

  • Information and assistance with estate planning for HD families.

  • Better support for families to help then take care of pHd’s.

  • More support and services to be provided to the Juvenile HD community.

  • More child oriented services for HD families. (Such as “How to tell the children”) Educating parents on how HD in a parent may impact children.

  • Education services for the spouse. Preparing the spouse to deal with the various problems that arise in HD marriages.

HD Awareness

  • HSDA should sponsor HD Families Awareness events. Not a fund raiser, but a picnic where HD families can meet others in the community. They can be used to identify future volunteers.

  • Assistance with coordinating local HD awareness for hospitals, emergency rooms, nursing homes, police stations, ambulances, etc.

  • Public service announcements explaining HD

Political Advocacy

  • Support local political advocacy. Assist with finding the right person to contact. Providing information to assist with the contact.

Chapter / Affiliate / National Youth Alliance Services

  • More support and services to be provided to the National Youth Alliance.

  • More 'after' NYA age group services, adults over age 29 who are unmarried and concerned about confidentiality, applying for LTC and LTD and life policies and are worried about marriage and having a family.

  • HDSA needs to encourage chapters to expand their influence by enabling them to use a larger percentage of locally raised funds to provide local services.

  • Chapters need more lead time on National initiated projects.

Fund Raising

  • HDSA needs to encourage more affordable “fun” fundraisers that are affordable to HD families. There shouldn’t be a minimum on donations for these events.

  • HDSA should have a “how to” training package ready to go – both in hard copy and online.

Medical Services

  • Better healthcare facilities for HD patients. Designing and building a center in every state that has the capabilities of the best of the best.

  • The creation of a medical group to focus on a more coherent treatment plan from neurologists.

  • We need HDSA to establish some medical education program that encourages “family care”. There is nearly always an impact on the physical and mental health of the caregiver and children. It should be treated as “not my problem” by the HD patient’s doctor.


  • HDSA needs to play an active role in encouraging collaboration with other HD organizations (HDF, CHDI, etc).

  • HDSA needs to be funding more cutting edge research.

Wednesday, May 13, 2009

Telling others what HD is all about - Awareness

I remember listening to a "how to improve communications" CD, and one of the tricks discussed was to open the brain gates of the listener by placing mental images in their mind, painting the context for the question you want to ask or the point you want to make.

We can be more effective in getting help for ourselves if we first insure that those we are going to approach have a clear and accurate picture of HD. This would seem to be the first step toward improving services for the HD community.

We have many marvelous heroes who have stepped forward to share their HD experiences with their friends and their community and to make clear the devastating impact it has on both the patient and the HD family. This aspect of personal advocacy is more important than you might first believe. It lays the foundation on which other types of advocacy can build.

Also, it’s nice that the entertainment industry finally discovered HD and is starting to write HD into their story lines. Call me a cynic, but this only seems to be mildly useful because it doesn’t paint that accurate mental image of HD that we need – or at least I haven’t yet seen a TV show that provides insight into life with HD. But what it does seem to do is encourage local cable stations to provide opportunities for HD families to discuss their experiences through hosted TV shows. An alternate media opportunity is the collection of personal video clips that HD families have put together and posted on Search on Huntington disease and you’ll find around 300 clips. Pick a few that tell the story you want to share and forward those to your friends and neighbors. You might even consider putting together your own. Several of those I’ve seen are very impressive and it seems like a good idea to forward a couple to your local radio or TV station when you ask them to add an interview with an HD family to their schedule.

Another media project in development, that if successful, will be a big win for the HD community is a project calling itself the Huntington’s Disease Documentary Project. You can read more about it at the project Web site at It sounds promising and I hope they will share some video clips. So far the video teaser that they have doesn’t work in my version of Internet Explorer, but does load in Firefox – just be patient since it takes awhile to download before it starts. Today I watched an hour long Alzheimer’s documentary on TV that kept me misty eyed for nearly the entire show. It touched me emotionally and now when someone talks to me about Alzheimer’s, snippets of that documentary will flash back and allow that person to reach me at a deeper and more personal level.

Monday, May 11, 2009

Let's Take a Fresh Look at HD Advocacy

A few things have changed since I last posted over a year ago. Louise Vetter is the new CEO of the Huntington’s Disease Society of America. I’ve relocated to Wilmington, Delaware. And I’ve joined the HDSA Board of Trustees. The Democrats have control of the Senate, House, and Executive branches of government. Yes, a few things have changed, so I’m sure there will be a lot to blog about this year.

Rather than focusing exclusively on universal healthcare, which will be an entertaining discussion later this year, I’d like to turn my attention to advocacy and how our small HD community can take advantage of the growing awareness of Huntington disease and the changes that are taking place at HDSA.

So what are the needs of the HD community? How do we meet those needs? What can the community do for itself if the infrastructure is in place? How can HDSA facilitate the building of the infrastructure? What services does HDSA need to directly provide?

It seems to me that a good place to start this project is to contact and learn from those who are doing advocacy well and then develop an approach to help others to be able to do the same.

Tuesday, February 5, 2008

Do We Really Have a Right to Universal Healthcare?

Since most of the material I’ve been reading regarding Universal Healthcare starts off with an argument that we each have right to good health the question seems like a good place to start my survey.

"Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control." – Universal Declaration of Human Rights

If I tell you that I have a right to good health, just what does that mean? According to that means that I am due good health. “Due” implies that if I can’t achieve it on my own then someone else owes me good health. How cool is that? I’m now declaring that I have a right to half of Bill Gates fortune and I expect the government to collect it for me. That seems pretty silly doesn’t it? Just because either I or some self-appointed or even an elected group declares they have a right to something doesn’t really mean that I’m automatically obligated to support their claim. They have that right only if I, out of good will or under duress, grant it to them. Said another way – they get what they want if I give them what they want or they can make me.

The US Declaration of Independence declares certain rights inalienable. This means that the rights claimed in the Declaration of Independence cannot be repudiated or transferred to someone else. Specifically – life, liberty, and the pursuit of happiness. So after these inalienable rights were declared how long did it take for the black community to enjoy some of these rights? If I remember correctly, a large portion of our nation had to be forced to give the black community what they expected - or at least the desire to work where they wanted. Additional desires such as being treated equally came through later combinations of force and legislation.

I‘ve concluded that the concept of “right” is just something we desire for ourselves and “universal rights” are generally noble desires – something that most people would want for everyone. What happens if there are obstacles to our being able to achieve our desires? If there are no obstacles we can just take what we want – the "I found it so it's mine" principle. If there is an obstacle then for us to be able to claim our right (get what we want) then we need to overcome the obstacle. If the obstacle is something other than another person we simply lay waste to the obstacle, relocate it, or work around it.

However, if the obstacle to achieving our proclaimed rights is another person who is also trying to achieve their own then we need to pursue our desires with a more delicate strategy. First, we try to negotiate with them so that we either achieve or come close to getting what we want in exchange for them achieving or coming close to their own desires. Failing that route of negotiation we then take them to court and try to convince the court that "our rights" are more important than the other persons'. If we aren't convincing then we try to figure if we are strong enough to get what we want by force. We can go to the government and have new laws passed that give us our desires or if we are strong enough and enough of us have the same desire then we can group together and take what we want by force.

Declaring what we want a “right” may make us feel better about it, but it doesn’t change the fact that if achieving my “right” (i.e. right to health) conflicts with a “right” you expect (i.e. right to property) then the discussion is not really about working together to achieve our individual rights – it’s about who wants what they want the most and is willing to fight hardest for it.

I couldn't help but laugh to myself when Wikipedia referenced the United Nations “Universal Declaration of Human Rights” as proof that Universal Healthcare was a right. There are many other so-called rights listed in that document that a good percentage of the member nations ignore. This clearly highlights the futility of assigning a label of “a right” to something that is nothing more than something most of us would like to see for all peoples.

So if Universal Healthcare isn’t a right, then what is it?

To answer the question for myself I painted a little picture. An HD family where the husband develops symptoms early but it goes undetected until he’s been fired from his job, he's spent the family savings on speculative stock options, two of their four children develop juvenile HD and as a result their medical bills go through the roof. The family has to file for bankruptcy. After losing their health insurance the mother develops breast cancer.

Does she have a right to health care paid for by someone else? Let’s not be silly and call it free healthcare. Healthcare is NEVER free. Someone is going to pay for it. As callous as it seems on the surface, no - she does not have a right to it. She wants it and it is even clear that she NEEDS it.

But the more appropriate question is do I have a duty to pay for it? Will I personally meet her needs? As a Christian my answer is – without question. But a catastrophic illness such as breast cancer is certainly not something I could pay for out of my pocket, and possibly more than a small local community effort could raise funds to cover. So the cost would need to be covered as part of a larger community program – state or national.

If the family were here illegally would I want to cover the cost? In this case I believe I would first try to send the family back to the country that they chose to maintain their citizenship with so that they could take advantage of their native country’s universal healthcare system. But if it were an emergency room situation I would take the “Good Samaritan” route and vote to cover the costs – if needed.

So I agree that the need for a Universal Healthcare system of some type is a valid need that I could support. I don’t consider it a right, but I don’t see how anyone can close their eyes to the healthcare needs of those who have lost their healthcare insurance or could never afford it – for whatever reason. By calling it "a right", I believe that the proponents of Universal Healthcare do themselves a disservice. Claiming something as "a right" almost guarantees a war.

Instead they would do well to call it a vision of compassion for the United States – a nation of "Good Samaritans".

Monday, February 4, 2008

US Healthcare - The Time for Reform is NOW!

On January 31, 2008 the American College of Physicians (ACP) kicked off their advocacy initiative with the goal to improve the US Healthcare system. Their mission is to have a system put into place that is "second to none". The elements of the vision that they have for this system include:

  • Everyone would have affordable health coverage.

  • Everyone would have access to a primary care physician to help guide them through the health care system (patient-centered medical home) - supported by public policies to assure a sufficient supply of primary care physicians.

  • Physicians' compensation would be based not just on how many services are provided, but also for their effectiveness in improving quality, coordinating care, and for preventative services.

  • Primary care physicians would receive higher compensation commensurate with their critical role in helping patients get high quality and efficient care.

  • Patients would be able to receive unbiased information on quality and cost and be rewarded with positive incentives to use health care wisely.

  • Paper claims would disappear and be replaced with a simple electronic billing system that all insurers would honor - just like all banks honor ATM cards.

  • Patients and their physicians would have electronic health records to provide them with evidence-based treatment guidelines, laboratory and diagnostic test results, medication lists, and medical histories at the point of care.

  • Patients and doctors would be able to choose among different treatment options based on independent research on their clinical effectiveness, costs and benefits compared to each other.

  • Patients and physicians would have access to the latest medical advances resulting from scientific research.

They've put together a "candidate's pledge" on these points and their asking all political candidates to sign it. Of course, none will do so - but that's not the point. The point is to make them aware that this new lobbying effort is in town and their job performance will be measured against this checklist.

With healthcare now at the forefront of political dialog I thought it would be fun to explore, in depth, the issues related to healthcare - who's proposing what and how will it impact HD families? For obvious reasons, the ACP's initiatives are biased toward the medical profession and seem to center around making sure that the primary care physician is the governing body in the domain of healthcare - and paid commensurate to the importance of their role. At this point I don't see any reason to disagree with this as long as patients can change primary care providers easily, privacy can be respected, and medical records can be transferred easily when requested by the patient.

Tuesday, February 6, 2007

GINA Talking Points

When you talk to a member of an elected official's offce you should introduce yourself and talk about your relationship with HD. Highlight your personal experiences with the disease and how important the vote for GINA is for you and your family.

In addition you should make sure that most, if not all, of the following points are brought out during the discussion.

  • Huntington's Disease is a devastating, hereditary, degenerative brain disorder that slowly diminishes a persons ability to walk, talk, think and reason.
  • HD is caused by a defective gene, and every person who has the gene has a 50/50 chance of passing the gene along to their children.
  • HD affects both genders and all ethnic groups equally.
  • Presently, there are no effective treatments and no cure for Huntington's Disease.
  • Individuals with the defective huntingtin gene usually develop symptoms of Huntington's Disease between the ages of 30-50. Until then they live full, normal, healthy lives.
  • Fear of genetic discrimination dissuades many at-risk individuals from entering into clinical trials, or undergoing genetic testing which hinders progress towards treatments and a cure.
  • HIPPA and the ADA leave gaps in privacy protections for individuals who are affected with conditions that have a genetic cause.
  • The Genetic Information Nondiscrimination Act (GINA) would ensjre that no person would face discrimination in employment or insurance based on genetic history.
  • GINA is necessary for those living at-risk for disease like HD to feel protected if and when they decide to be tested or enter into a clinical trial.
I'm not sure why the following wasn't included on HDSA's GINA talking points but I'd add the following:

  • A positive gene test may result in a person being unable to acquire health insurance years before any symptoms of HD are manifest and as a result going on a health care program funded by public taxes when they could be under an employer funded health care program.