Sunday, January 28, 2007

GINA Hearings to begin this week. Email the committee members!

Apparently 100 letters of support were collected from HD families by HDSA's efforts in support of the GINA legislation. With presumably 30,000 family members in the U.S. impacted by this disease one would assume that we would be able to provide a few more letters than that - especially regarding an issue that is so vitally important. It WAS a short notice, so one must factor that in.

HDSA is now collecting letters to send to the Speaker of the House, the Majority and Minority leaders of the house and the Chairman and Ranking Members of all three committees who will debate GIBA before it reaches the floor.

HDSA is generously providing a form template for the email, but according to what I've read, if we can each provide a custom letter, incorporating the essence of HDSA's form letter but personalizing it so that the members know that we are REAL people, then HDSA's efforts will be much more effective. HOWEVER - if making the effort to customize it is a mental block then please send at least the template. Any action is at least a billion times better than no action at all. (See the HDSA Alerts for template information.)

Thanks to some friendly birds at the High Q Foundation and The Alliance for Genetic Fairness I found out that the Subcommittee on Health, Employment, Labor and Pensions will be holding a hearing on the topic of "Protecting Workers from Genetic Discrimination". This is is scheduled at 10:30 a.m. in room 2175 Rayburn H.O.B. If you can be there it would be really good to have some bodies in the room.

Tuesday, January 23, 2007

Genetic Information Nondiscrimination Act of 2007

This bill (H.R. 493) was recently introduced to the House. From the perspective of a Huntington's disease family member THIS IS ESSENTIAL LEGISLATION. There are many who are against it for reasons of their own.

Insurance companies want to reduce their risk so that they can both keep their insurance premiums lower and thereby more competitive - as well as maximize their profits. If they can defeat this legislation, and they will certainly try, then they win and HD family members lose.

Those non HD family members who only care about their insurance premiums will also be lobbying against this. As noted in the bill, In times past there have been efforts by state legislators to pass laws that use genetic information to exclude individuals from proper and fair health care.

Health insurance is about sharing risk but it's unfortunate that many insurance companies would prefer to eliminate risk rather than adjusting premiums to account for it. All insurance companies must be forced to share this risk through legislation at a Federal level. If one starts excluding a group of individuals in order to be able to deliver a lower premium then the others will quickly follow in order to avoid losing market share. Presymptomatic individuals will be forced to go without health insurance and much of the cost of their medical care will be picked up by the public and paid for through taxes (rather than being paid for by the individual).

Let's start the lobbying efforts and make it intense. Write your representatives. Write the editor of your paper. Share your experiences. I believe that this is the second time around for this legislation, but I wouldn't trust that the third time will be the charm.

For your guide to start your personal lobbying efforts go to:

Wednesday, January 17, 2007

Where are the HD caregivers?

I debated intensely with myself as to whether I would admit this or not. But in order to share this with you I am forced to admit that I'm old and that I read old people stuff. I was flipping through my recent copy of the AARP Bulletin and my eyes landed on an opinion piece titled "Who Will Care for You?" by Robert Butler, M.D.

It starts off with a quote from Rosalynn Carter -

There are only four kinds of people in the world: those who have been caregivers; those who are currently caregivers; those who will be caregivers; those who will need caregivers.

The article was primarily about the challenges with finding caregivers for the elderly and what should be done to prevent a crisis situation from developing. But OUR crisis in the HD community is now and we have the exact same needs for those in the later stages of HD.

It doesn't look good. Dr. Butler observed that paid caregivers can often make more money working in a fast food restaurant. Unpaid caregivers get virtually NO help! There are efforts through community colleges to start providing caregiving education and job assistance, but it is definitely in it's infancy.

The two organizations that are focusing their efforts in this area (for the elderly) are the Schmieding Center for Senior Health and Education in Springdale, Arkansas and the International Longevity Center in New York. These two organizations are behind the Caregiving Project for Older Americans. I'm wondering if there is something to be learned that could be used for a "Caregiving Project for Huntington's Disease Patients".


I'd like to point out that I've taken what I've learned during my efforts to advocate for embryonic stem cell research and reworked the HDAC Political Action Portal to "optimize it" for advocacy work. The URL for the page is I'll be continually updating this portal to reflect what's going on and what I'm blogging (or blathering) about here.

Tuesday, January 16, 2007

What Approach is Most Effective?

I went back to the The Electronic Frontier Foundation’s advocacy section and reviewed the following:

In order of MOST to LEAST effective, these are the means of contacting legislators:

1. personal visit to the legislator's Washington DC office or home-state office

2. personally handwritten but LEGIBLE short letter

3. personally typewritten or word-processed letter

4. phone call to a key staffer in the office

5. phone call to the reception staffers in the office

6. personally written fax

7. an obvious form letter or fax

8. personally written e-mail

9. an obvious form e-mail

In order of MOST to LEAST effective, these are the kinds of people who contact legislators

1. government officials

2. constituent organizations or corporations (entities in the legislator' home district/state)

3. individual constituents (voters in the legislator's home district/state)

4. major international, national or regional organizations or corporations

5. little-known international, national or regional orgs. & corps.

6. non-constituent individual Americans

7. foreign individuals, or foreign orgs. & corps.

This may of course vary with the circumstances of the issue at hand, but it's a good rough guide.

We need to balance our advocacy efforts with our desire to make something happen and also take into account the odds of being able to make it happen. I happen to live in our State’s capitol so it wouldn’t be out of the question for me take an early or late lunch and walk up to the steps to talk to a state legislator if it was warranted (although currently I have no idea how to make that happen).

A personally handwritten letter might be effective, but I understood from something I read earlier that mail takes one to two months to arrive in a legislator’s office because of terrorism prevention procedures that are in place. So I would expect that a personally written fax is probably the way to go.

The House provides an Internet based method of communicating that is probably just as effective as a personally written fax.

I noticed that being contacted by constituent organizations or corporations are considered more effective than individual constituents and even more effective than national organizations. So what would a constituent organization for Huntington’s disease look like? How would I go about building one? What would it cost in the way of time and money to build one? With such a small percent of the population being directly impacted we would need to have a “Family and Friends of ...” type advocacy organization. This seems to me to be something that might be worth taking a closer look at, at a later time.

Anyway, I sent my “vote for stem cell research expansion” to my Congressman. It looks like I should fax it to my Senators.

I rechecked the status of the resolution and found:

Latest Major Action: 1/12/2007 Read the second time. Placed on Senate Legislative Calendar under General Orders. Calendar No. 6.

Very good, when is THAT scheduled to take place? I reviewed “related bills” and found S.5 which is the Senate version of this which was read on 1/8 and “placed on the Senate Legislative Calendar under General Orders Calendar No. 3. Although there were several links labeled “Calendar” it seems that those pages are only what has taken place, not what is to be. Could it be that our Senate doesn’t know what’s going to happen tomorrow? It seems so. I’ll just need to find a fax machine and send my letter as soon as possible.

Thursday, January 11, 2007

Researching the House Resolution

I went to the Library of Congress’ Thomas Web site: ( and searched (with the text button on) on H.R.3 and, of course, the direct hit was not H.R.3 but was H.R.6 which mentioned H.R.3. But being of a curious nature I opened it up to see what it was saying about H.R.3.


(a) Upon the adoption of this resolution it shall be in order to consider in the House the bill (H.R. 3 ) to amend the Public Health Service Act to provide for human embryonic stem cell research. All points of order against the bill and against its consideration are waived. The bill shall be considered as read. The previous question shall be considered as ordered on the bill to final passage without intervening motion except: (1) three hours of debate equally divided and controlled by the Majority Leader and the Minority Leader or their designees; and (2) one motion to recommit.

(b) During consideration of H.R. 3 pursuant to this resolution, notwithstanding the operation of the previous question, the Chair may postpone further consideration of the bill to a time designated by the Speaker.

I found this interesting. This was just a minor section of House Resolution 6. I checked the status of this resolution and it passed in the house by what seems to me to be less than a comfortable margin of 232 to 200. Now I haven’t the vaguest idea of what else is in the bill and I’m not likely to take time to look. But a quick scan showed that it’s a whole mess of totally unrelated items – mixed in there as it is with prescription drugs, 9/11 stuff, minimum wage, etc.

Then I went back and searched on “Stem Cell” and found the resolution I was looking for. (I could have also searched on the specific bill number (instead of "as text") H.R.3 but where is the fun in doing things the easy way?) Calling it up, the first thing I noticed that it was introduced on the 5th and immediately referred to the House Committee on Energy and Commerce. As usual, I’m behind schedule. Why couldn’t HDSA give me 30 days notice? Just kidding! The real question is “Why has it taken me so long to do this?”!

I also learned that this resolution is being presented as an amendment as follows:


Part H of title IV of the Public Health Service Act (42 U.S.C. 289 et seq.) is amended by inserting after section 498C the following:


(a) In General- Notwithstanding any other provision of law (including any regulation or guidance), the Secretary shall conduct and support research that utilizes human embryonic stem cells in accordance with this section (regardless of the date on which the stem cells were derived from a human embryo) .

(b) Ethical Requirements- Human embryonic stem cells shall be eligible for use in any research conducted or supported by the Secretary if the cells meet each of the following:

(1) The stem cells were derived from human embryos that have been donated from in vitro fertilization clinics, were created for the purposes of fertility treatment, and were in excess of the clinical need of the individuals seeking such treatment.

(2) Prior to the consideration of embryo donation and through consultation with the individuals seeking fertility treatment, it was determined that the embryos would never be implanted in a woman and would otherwise be discarded.

(3) The individuals seeking fertility treatment donated the embryos with written informed consent and without receiving any financial or other inducements to make the donation.

(c) Guidelines- Not later than 60 days after the date of the enactment of this section, the Secretary, in consultation with the Director of NIH, shall issue final guidelines to carry out this section.

(d) Reporting Requirements- The Secretary shall annually prepare and submit to the appropriate committees of the Congress a report describing the activities carried out under this section during the preceding fiscal year, and including a description of whether and to what extent research under subsection (a) has been conducted in accordance with this section.'.

This resolution looks reasonable to me. Actually my libertarian genes are screaming at me telling me that the fact that Congress is in this at all is just wrong – but that’s a totally different argument and since Congress has chosen to play in this game and since they write the rules of the game, then we play. Also, I happen to love the stadium . Have you ever been to Minute Maid Ballpark in Houston? I love that stadium too – but I digress.

Next, I checked the status of H.R.3 is and found that it has been referred to the House Committee on Energy and Commerce. Most excellent! I just need to get the names of the House Committee on Energy and Commerce and send each one of them a “love my stem cells” letter. I went back to and clicked on Committees and found the link for House Committee on Energy and Commerce and clicked on it. I was immediately taken to the committee’s Web site at

Well, this is a bummer. The only thing I know for sure is that Congressman John Dingell is the committee chairman. The site says that they are still determining who is on the committee. Is this just an instance of the Web site not catching up or do they really not know yet who the committee members are going to be? It looks like I may need to find some “unofficial sites” to learn what’s going on.


Just before I left work for the day I just saw the CNN article on the Stem Cell legislation.

Apparently they’re going to pass this thing without my help! . I think I’ll focus my efforts on first informing the President of my position on the topic since that is where the first problem is and then come back to John Carter whose vote will be needed to override the inevitable veto.

Wednesday, January 10, 2007

And what is my Congressman's position? Ack!

Since the first target of my advocacy effort is The Honorable Congressman John Carter I thought it would be a good idea to know what his official position on stem cell research is. This will give me a clue as to how my letter should be organized and what parts of it should be emphasized. I assumed that if he’s proud of his position on the issue then he would have it posted on his Web site. And there I found it:

Carter Comments On Stem Cell Legislation

Washington, May 24, 2005 -

Washington, D.C. – U.S. Representative John R. Carter (TX-31), a former state district judge of 20 years, made the following statement after the House of Representatives passed H.R. 810, which would allow federal tax dollars to fund stem cell research:

"I cannot convey the deep disappointment that I have in my heart. I fully support advances in medical research, but I believe the government has a legitimate purpose of protecting the most helpless and innocent of our society – the unborn child.

"Tonight, we failed to achieve our purpose, but strived to correct our mistake by passing H.R. 2520 which would authorize medical research on human cord blood stem cells without causing harm to the mother or child."

Obviously he and I are not on the same page on this issue. So it seems my email to him should include something that would enlighten him on the issue as well as emphasize how an elected official’s position on this issue will weigh heavily on how I vote.

However, I wonder what real value there is in writing him when he is so proud of being in the minority on this issue? I could remind him that he IS in the minority with only 37% opposed to it and 54% supporting it. I could point out that he is not protecting anyone - in fact his position is potentially condemning tens of thousands of U.S. citizens to death by HD. If anyone else has any thought on what I should include please feel free to comment.

Next I'm going to get as much current information as I can about the Stem Cell Research Enhancement Act bill (as recommended by the EFF advocacy page). It was suggested that it would be more effective to refer to specific sections of the bill. Will knowing what I'm talking about REALLY make me more effective? :-)

Tuesday, January 9, 2007

What to do with an HDSA Alert?

Yesterday I passed along an HDSA alert without comment. At the time I was obviously wearing my “Information Sharer” hat instead of my new “Hd Advocate” hat. It seems that I’m still trying to adjust the band on the new hat. I want to spend a little more time on this alert and actually do something with it that I believe will make as much of an impact as possible – however small it may be.

So now that I’ve received an alert what should I do with it? HDSA clearly asked us to take action.

“Please contact your Congressional Representative and Senators TODAY and ask them to support the Stem Cell Research Enhancement Act. For your representatives go to and

My first thought concluded that passage of this bill moves HDSA further along in achieving their mission. What is their mission? Their mission is to find a cure for Hd – and the means to achieve that is to fund as best they can, as many research opportunities as possible that look promising. More research means more opportunities to identify a cure.

Note: I’ll not argue with anyone that a cure for a genetic disease is likely impossible so you should assume that when I use the word “cure” that I’m referring to a treatment that will either stop the progression of the disease or delay the damage it does until an advanced age.

I’m already contributing as much as I should toward funding research. Embryonic stem cell research is another frontier – just as promising as any other and since I also want to see this opportunity grow it only makes since that I should make some effort to make it happen.

The first thing I did was go to as directed by the alert and up in the top left of the page there is a box for “Find Your Representative” so I typed in my Zip code clicked on Go. The result was the representative for my district who is John Carter of the 31st District of Texas. I then clicked on his name which took me to his Web site. A couple of clicks later I ended back up at the Web site on the page. Maybe I missed something but I should have been directed to in the first place. The page is: I think this page, from their perspective, is effective because they have a few tricks in place to reduce automated spam from lobbying groups. So now I know HOW this communication is going to take place. What will take place is that I’ll select my congressman and then work through their filters and then I’ll be prompted for the text of my message to my congressman. So I need to first prepare my message.

To the Honorable John Carter, ….

I think I need some coaching on how to effectively write to my congressman. It’s Google time.

I’m easily distracted and this time is no exception. I stumbled across and spent too much time bouncing around its pages. I need to get back on track so I made a note to return at a later time.

Here are some simple tips that I found while bouncing around the Net.

  1. Include your address and phone number, the date, their address and a salutation something like the following: To the honorable Senator John Q. Politician.
  2. Include a reference to the bill by its specific number or however it is known.
  3. In the body of your letter make it clear what you know about the topic, what you know about your congressman’s involvement with that issue, what you want and what you will do politically to get it.By stating what you will do politically I mean the following. You will be most effective if you come right out and politely but clearly tell your congressman that if they want your vote in the next election they should vote the way you are asking them to on that particular issue.This makes it very certain where you stand and that you are serious.
  4. You can write about several issues in one letter but may find it more effective to write a separate letter on each issue.
  5. If you have any genuine political influence yourself you may want to find a way of making it known as well.
  6. Request a reply to your letter, which you should always receive regardless.
  7. Sign and date it.

But then I came to the Electronic Frontier Foundation’s instructions on how to effectively contact your congressional representatives. Egad! I’ve obviously got a little more studying to do. (Insert pregnant pause here). About 2/3 into the page ( ) all of the interesting stuff starts (printed out it’s 12 pages long so the really good stuff starts on page 8. Further down the section on “do’s and don’ts” is really sweet stuff for beginning advocates like me.

Well, I obviously need to take some time and carefully craft my letter based on these new insights. First impressions are always the best impressions - right?

Monday, January 8, 2007

It's a Proud Day in Austin, TX

Warning: This is my educational diary and if I actually manage to learn something then my experiences might be both entertaining and educational to others. Since I don’t know where this is going to lead I’ll go ahead and include the warning that this blog might be responsible for wasting your time. So if you continue to consume this blog don’t complain to the Federal government that there wasn’t a warning label.

Before I start on my journey I want to applaud the efforts underway to expand the safety net for those with mental illness in Travis County (Austin, TX area). The support services for the mentally ill in Texas have been abysmal. A collaboration of hospitals, nonprofit groups, governments and the Travis County Healthcare District will be spending more than three million to expand such services in the Austin area. Over the last year I’ve seen a few articles in our local Austin American Statesman that recognized the need for these services and the lack thereof. Apparently those that could do something about it stepped forward. I think there are some lessons here, so I’ll certainly revisit this.


To begin, I thought a good place to start would be to review the current “State of HD Advocacy”. A casual glance at what’s going on – at least that which is available through the Internet – makes it appear that very little effort is being made by (nor in support of) the HD community to advocate for ourselves. However there are MANY examples that show where there is a serious need.


“Become an HDSA Advocate!” That is the headline on the HDSA Web site that asks for volunteer advocates. But wait… what’s that next sentence? “Terms and Conditions?” – That seems rather ominous.

After reading the list of “I agree to…’s”, in a nutshell it says that you can represent yourself as an HDSA advocate but ONLY if you limit yourself to what HDSA permits you to say. That’s fair enough – if I were an HDSA staff member. However, knowing that HDSA’s mission is primarily to be a fund-raiser for HD research and my mission will be primarily improving social services for HD families, I don’t believe that being limited to HDSA’s mission is going to work for me.

However, if you’d like to be an HDSA Advocate then you should contact Erin Dorrien at the Huntington’s Disease Society of America. Her phone number is 212.239.3430.


Oh my. A Google search on “Huntington’s Disease Advocacy” is cluttered with references to my all time favorite Web site – the “Huntington’s Disease Advocacy Center” ( However, that Web site that belongs to me and Marsha - my close friend, confidant, and partner in the field of HD information sharing.

Nice site and it has a, advocacy portal and there ARE a few articles on advocacy, but it’s not exactly what I was looking for . In fact it is exactly that advocacy portal that I expect to see significant improvement on by the end of this year. HDAC has an HD family information sharing focus with an emphasis on self advocacy. We have a VERY active message board with awesome HD family members that contribute an amazing amount of time to helping each other and if you haven’t been there you should stop by and visit.

It seems that each year we are either compelled to try to energize the HD community or we jump on someone else’s bandwagon. But for some reason the momentum of these efforts isn’t sustained – although it certainly seems that there was a significant improvement in HD Awareness in 2006.


While sifting through the HDAC clutter I found a reference to Jean Miller’s advocacy page and a page that references “We Move” as an advocacy organization. Well, I already know Jean’s site is going to be a good starting point for locating HD specific resources. I visited the WeMove site and wasn’t impressed with their HD support, however – since their stated mission is educating healthcare professionals about movement disorders and clinical management I think their focus is more generic and their program is probably worth a serious look at a later time.

Well, that’s it for today. Tomorrow I think I’ll spend a little more time on Jean’s site and see where that leads me.


From a recent HDSA Advocacy Alert -

Subject: Advocacy Alert-Stem Cell Research Enhancement Act

The Stem Cell Research Enhancement Act

When the 110th Congressional Session convenes on January 4th one of the first three pieces of legislation introduced will be the Stem Cell Research Enhancement Act. This legislation will expand the number of stem cell lines available for federally funded research while providing stricter oversight and guidelines regarding how the cells are obtained.

Under current law only stem cells derived before August 9, 2001 fall under federally funded guidelines for use in research. None of these lines contain the defective huntingtin gene and will not benefit HD research. The new law will expand the number of stem cell lines available, thereby providing valuable resources to researchers and promoting scientific discovery.

The proposed law also sets strict requirements and guidelines for how the stem cells are collected and ensures that:

  1. Embryos used to derive the stem cells were originally created for fertility purposes and are in excess of clinical need;
  2. The individuals from which the embryos are created have determined that they will not be implanted and therefore these embryos would be destroyed; and
  3. These individuals have provided written consent to derive stem cells from these embryos.

Oversight by the NIH will provide clear guidelines to researchers on using stem cells derived from human embryos and ensures that ethical considerations are met while the search for cures for devastating diseases continues.

HDSA supports federally funded stem cell research that strictly adheres to NIH guidelines or federal law. Please contact your Congressional Representative and Senators TODAY and ask them to support the Stem Cell Research Enhancement Act. For your representatives go to and