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.
  

HDSA Legislative Issue Positions

Erin Dorrien is the Advocacy and Family Services Manager for the Huntington's Disease Society of America. She comments in a letter to HDSA Advocates "We would like to harness the energy from our efforts with GINA to not only educate your communities on the importance of this legislation but educate your communities about HD and HDSA.

Due to clutch (auto) problems I was unable to participate in the HDSA Advocate conference call on GINA, but I did get the information packet and since Erin has asked that this information be shared with the community I thought I'd take the liberty here to share with my cybercommunity.

So what ARE HDSA's legislative priorities? I think I'm at liberty to present them. I suppose the HDSA lawyers will contact me if that's not the case.

Genetic Privacy and Non-Discrimination: HDSA supports federal and state legislation prohibiting the disclosure of genetic information to employers, insurers and other institutions without the permission of the individual. Also, HDSA supports federal and state legislation that prohibits employer discrimination based on the outcome of a genetic test or a family history of genetic disorder. Current federal law (HIPAA and ADA) contains several gaps and ambiguities that can potentially lead to genetic discrimination.

NIH Reauthorization: HDSA supports increased funding for NINDS (National Institute of Neurological Disorders and Stroke) and other institutes at the NIH that deal with Huntington’s Disease (HD) and other related brain disorders. This funding will insure continued money for research. HDSA opposes any measure that would abolish or consolidate any of the independent institutes within the NIH.

Medicare Part D/Government pharmaceutical price negotiation: HDSA is not opposed to the government acting as party in negotiations with pharmaceutical companies on the behalf of Medicare recipients. However, HDSA does oppose the “Medicare Enhancements for Needed Drugs Act of 2007.” This was introduced on January 10, 2007, and would require the Secretary of HHS to “negotiate contracts with manufacturers of covered part D drugs when the drug is a single source drug without therapeutic equivalent.” The fear is companies developing innovative therapies, which would be considered “single source,” will be discouraged from pursuing future breakthroughs. With the government negotiating the price of single source drugs, companies may decide developing new therapies is too costly. The law would discourage the development of therapies that could substantially benefit those suffering from rare diseases.

Stem Cell Research: HDSA supports the use of stem cell technology, in finding a cure for Huntington’s Disease, consistent with the recommended guidelines of the National Institutes of Health and as permitted by law. Stem cell research may eventually play a role in the treatment of Huntington’s Disease. HDSA supports the Stem Cell Research Enhancement Act, which would increase the number of stem cell lines available for use in federally funded research, and would follow the guidelines set forth by the NIH.

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.

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: http://www.hdac.org/pac/

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".

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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 http://www.hdac.org/pac/. I'll be continually updating this portal to reflect what's going on and what I'm blogging (or blathering) about here.

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.

Researching the House Resolution

I went to the Library of Congress’ Thomas Web site: (http://thomas.loc.gov/home/c110query.html) 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.

SEC. 509. SPECIAL ORDER OF BUSINESS: STEM CELL.

(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 5^th 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:

SEC. 2. HUMAN EMBRYONIC STEM CELL RESEARCH.

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:

SEC. 498D. HUMAN EMBRYONIC STEM CELL RESEARCH.

(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 house.gov 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 http://energycommerce.house.gov/.

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.

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Just before I left work for the day I just saw the CNN article on the Stem Cell legislation. http://www.cnn.com/2007/POLITICS/01/11/stem.cell.ap/index.html.

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.