tag:blogger.com,1999:blog-38093363692645133362024-02-08T11:49:29.694-06:00The Hd AdvocateThe Huntington's disease community is in unbelievable need of help and support. My mission here is to unearth opportunities and discuss them in excrutiating detail. Your feedback will be greatly appreciated.Steve Irelandhttp://www.blogger.com/profile/06680957401958216645noreply@blogger.comBlogger16125tag:blogger.com,1999:blog-3809336369264513336.post-64652854240685048452009-05-16T20:11:00.007-06:002009-05-17T21:15:53.399-06:00Types of HD AdvocacyOne 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.<br /><br /><strong>Family Services</strong> - 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.<br /><br /><strong>HD Awareness</strong> - 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.<br /><br /><strong>Political Advocacy</strong> - 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.<br /><br /><strong>Medical Services</strong> - 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.<br /><br /><strong>Research</strong> - 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.<br /><br /><strong>Fund Raising</strong> – 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.Steve Irelandhttp://www.blogger.com/profile/06680957401958216645noreply@blogger.com1tag:blogger.com,1999:blog-3809336369264513336.post-47792761550832094672009-05-16T14:17:00.004-06:002009-05-16T14:38:59.164-06:00Results of HD Advocacy PollI 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 <a href="http://www.hdac.org/phorum/read.php?5,53365">http://www.hdac.org/phorum/read.php?5,53365</a>. I'll be providing the requests in some fashion to HDSA.<br /><br /><b>Family Services</b> <ul><br /><li>HDSA should offer more comprehensive services such as the Muscular Dystrophy Association does (www.mda.org)</li><br /><li>Internet support services</li><br /><li>Assistance with social security, insurance applications to insure that families are providing the information needed to do it right the first time.</li><br /><li>Speaking out for the rights of those who cannot or are too shy to do so.</li><br /><li>Assistance with locating nursing homes and care facilities that will take HD patients. Finding “Medicaid” beds for HD patients is a particularly onerous problem.</li><br /><li>Information and assistance with estate planning for HD families.</li><br /><li>Better support for families to help then take care of pHd’s.</li><br /><li>More support and services to be provided to the Juvenile HD community.</li><br /><li>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.</li><br /><li>Education services for the spouse. Preparing the spouse to deal with the various problems that arise in HD marriages.</li><br /></ul><br /><br /><b>HD Awareness</b><br /><ul><br /><li>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.</li><br /><li>Assistance with coordinating local HD awareness for hospitals, emergency rooms, nursing homes, police stations, ambulances, etc. </li><br /><li>Public service announcements explaining HD</li><br /></ul><br /><br /><b>Political Advocacy</b><br /><ul><br /><li>Support local political advocacy. Assist with finding the right person to contact. Providing information to assist with the contact.</li><br /></ul><br /><br /><b>Chapter / Affiliate / National Youth Alliance Services</b><br /><ul><br /><li>More support and services to be provided to the National Youth Alliance.</li><br /><li>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.</li><br /><li>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.</li><br /><li>Chapters need more lead time on National initiated projects.</li><br /></ul><br /><br /><b>Fund Raising</b><br /><ul><br /><li>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.</li><br /><li>HDSA should have a “how to” training package ready to go – both in hard copy and online.</li><br /></ul><br /><br /><b>Medical Services</b><br /><ul><br /><li>Better healthcare facilities for HD patients. Designing and building a center in every state that has the capabilities of the best of the best.</li><br /><li>The creation of a medical group to focus on a more coherent treatment plan from neurologists.</li><br /><li>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. </li><br /></ul><br /><br /><b>Research</b><br /><ul><br /><li>HDSA needs to play an active role in encouraging collaboration with other HD organizations (HDF, CHDI, etc).</li><br /><li>HDSA needs to be funding more cutting edge research.</li><br /></ul>Steve Irelandhttp://www.blogger.com/profile/06680957401958216645noreply@blogger.com17tag:blogger.com,1999:blog-3809336369264513336.post-76442760378478343532009-05-13T19:20:00.002-06:002009-05-13T19:24:45.624-06:00Telling others what HD is all about - AwarenessI 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.<br /><br />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.<br /><br />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.<br /><br />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 <a href="http://www.youtube.com/">http://www.youtube.com</a>. 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.<br /><br />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 <a href="http://huntingtonsdiseasedocumentary.com/">http://huntingtonsdiseasedocumentary.com/</a>. 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.Steve Irelandhttp://www.blogger.com/profile/06680957401958216645noreply@blogger.com1tag:blogger.com,1999:blog-3809336369264513336.post-9130014621948165382009-05-11T21:07:00.003-06:002009-05-12T05:33:18.979-06:00Let's Take a Fresh Look at HD AdvocacyA 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.<br /><br />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.<br /><br />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?<br /><br />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.Steve Irelandhttp://www.blogger.com/profile/06680957401958216645noreply@blogger.com2tag:blogger.com,1999:blog-3809336369264513336.post-32756333328728470862008-02-05T20:01:00.000-06:002008-02-06T07:07:10.115-06:00Do 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.<br /><br /><span style="font-family:arial;font-size:85%;">"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</span><br /><br />If I tell you that I have a right to good health, just what does that mean? According to dictionary.com that means that<strong> </strong><em>I am due</em> 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.<br /><br />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.<br /><br />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.<br /><br />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 <em>that</em> 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.<br /><br />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.<br /><br />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.<br /><br />So if Universal Healthcare isn’t a right, then what is it?<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />Instead they would do well to call it a vision of compassion for the United States – a nation of "Good Samaritans".Steve Irelandhttp://www.blogger.com/profile/06680957401958216645noreply@blogger.com2tag:blogger.com,1999:blog-3809336369264513336.post-33752478202616337922008-02-04T07:15:00.000-06:002008-02-04T07:23:11.473-06:00US 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:<br /><br /><ul><br /><li>Everyone would have affordable health coverage.</li><br /><li>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.</li><br /><li>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.</li><br /><li>Primary care physicians would receive higher compensation commensurate with their critical role in helping patients get high quality and efficient care.</li><br /><li>Patients would be able to receive unbiased information on quality and cost and be rewarded with positive incentives to use health care wisely.</li><br /><li>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.</li><br /><li>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.</li><br /><li>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.</li><br /><li>Patients and physicians would have access to the latest medical advances resulting from scientific research.</li><br /></ul><br /><br /><p>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.<br /><br /><p>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.<br /></p>Steve Irelandhttp://www.blogger.com/profile/06680957401958216645noreply@blogger.com0tag:blogger.com,1999:blog-3809336369264513336.post-4367558750911654112007-02-06T20:23:00.000-06:002007-02-07T11:32:50.584-06:00GINA Talking PointsWhen 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.<br /><br />In addition you should make sure that most, if not all, of the following points are brought out during the discussion.<br /><br /><ul><li>Huntington's Disease is a devastating, hereditary, degenerative brain disorder that slowly diminishes a persons ability to walk, talk, think and reason.</li><li>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.</li><li>HD affects both genders and all ethnic groups equally.</li><li>Presently, there are no effective treatments and no cure for Huntington's Disease.</li><li>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.</li><li>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.</li><li>HIPPA and the ADA leave gaps in privacy protections for individuals who are affected with conditions that have a genetic cause.</li><li>The Genetic Information Nondiscrimination Act (GINA) would ensjre that no person would face discrimination in employment or insurance based on genetic history.</li><li>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.</li></ul>I'm not sure why the following wasn't included on HDSA's GINA talking points but I'd add the following:<br /><br /><ul><li>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.<br /></li></ul>Steve Irelandhttp://www.blogger.com/profile/06680957401958216645noreply@blogger.com4tag:blogger.com,1999:blog-3809336369264513336.post-2635553695419126332007-02-06T19:45:00.000-06:002007-02-06T20:17:25.982-06:00HDSA Legislative Issue PositionsErin 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.<br /><br />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.<br /><br />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.<br /><br /><p class="MsoNormal"><b style=""><u>Genetic Privacy and Non-Discrimination</u>: </b>HDSA supports federal and state legislation prohibiting the disclosure of genetic information to employers, insurers and other institutions without the permission of the individual.<span style=""> </span>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 <st1:city><st1:place>ADA</st1:place></st1:city>) contains several gaps and ambiguities that can potentially lead to genetic discrimination.</p><p class="MsoNormal"><br /><span style=""> </span></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal"><b style=""><u>NIH Reauthorization: </u></b>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.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal"><b style=""><u>Medicare Part D/Government pharmaceutical price negotiation:</u></b><span style=""> </span>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<span style=""> “Medicare Enhancements for Needed Drugs Act of 2007.” This was introduced on </span><st1:date year="2007" day="10" month="1"><span style="">January 10, 2007</span></st1:date><span style="">, 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.<span style=""> </span>The law would discourage the development of therapies that could substantially benefit those suffering from rare diseases.</span></p><p class="MsoNormal"><br /><span style=""> <o:p></o:p></span></p> <p class="MsoNormal"><b style=""><u><span style="color:black;"><o:p><span style="text-decoration: none;"> </span></o:p></span></u></b></p> <p class="MsoNormal"><b style=""><u><span style="color:black;">Stem Cell Research:</span></u> <span style=""> </span></b>HDSA supports the use of stem cell technology, in finding a cure for Huntington’s Disease, <b style="">consistent with the recommended guidelines of the National Institutes of Health and as permitted by law</b>. Stem cell research may eventually play a role in the treatment of Huntington’s Disease.<span style=""> </span>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. </p> <p class="MsoNormal"><o:p> </o:p></p>Steve Irelandhttp://www.blogger.com/profile/06680957401958216645noreply@blogger.com2tag:blogger.com,1999:blog-3809336369264513336.post-89991301193532595962007-01-28T16:08:00.000-06:002007-01-28T16:32:34.394-06:00GINA 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.<br /><br />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.<br /><br />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 <a href="http://www.hdsa.org/site/PageServer?pagename=HDSA_Email_Alerts">HDSA Alerts</a> for template information.)<br /><br />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.Steve Irelandhttp://www.blogger.com/profile/06680957401958216645noreply@blogger.com0tag:blogger.com,1999:blog-3809336369264513336.post-51204919136262942742007-01-23T11:36:00.000-06:002007-01-23T12:10:48.779-06:00Genetic Information Nondiscrimination Act of 2007This 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.<br /><br />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.<br /><br />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.<br /><br />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).<br /><br />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.<br /><br />For your guide to start your personal lobbying efforts go to: <a href="http://www.hdac.org/pac/">http://www.hdac.org/pac/</a>Steve Irelandhttp://www.blogger.com/profile/06680957401958216645noreply@blogger.com0tag:blogger.com,1999:blog-3809336369264513336.post-14019809817718259422007-01-17T19:15:00.000-06:002007-01-17T20:01:12.728-06:00Where 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.<br /><br />It starts off with a quote from Rosalynn Carter -<br /><br /><blockquote>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.<br /></blockquote><br />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.<br /><br />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.<br /><br />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".<br /><br /><div style="text-align: center;">~~~~~<br /></div><br />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 <a href="http://www.hdac.org/pac/">HDAC Political Action Portal</a> to "optimize it" for advocacy work. The URL for the page is <a href="http://www.hdac.org/pac/">http://www.hdac.org/pac/</a>. I'll be continually updating this portal to reflect what's going on and what I'm blogging (or blathering) about here.Steve Irelandhttp://www.blogger.com/profile/06680957401958216645noreply@blogger.com1tag:blogger.com,1999:blog-3809336369264513336.post-58819921309027839472007-01-16T12:13:00.000-06:002007-01-16T12:16:26.806-06:00What Approach is Most Effective?<p class="MsoNormal">I went back to the The Electronic Frontier Foundation’s advocacy section and reviewed the following:</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i></i></p><blockquote><p class="MsoNormal" style="margin-left: 0.25in;"><i>In order of MOST to LEAST effective, these are the means of contacting legislators:<o:p></o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i><o:p> </o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i><span style=""> </span>1. personal visit to the legislator's </i><st1:place><st1:city><i>Washington</i></st1:city><i> </i><st1:state><i>DC</i></st1:state></st1:place><i> office or home-state office<o:p></o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i><span style=""> </span>2. personally handwritten but LEGIBLE short letter<o:p></o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i><span style=""> </span>3. personally typewritten or word-processed letter<o:p></o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i><span style=""> </span>4. phone call to a key staffer in the office<o:p></o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i><span style=""> </span>5. phone call to the reception staffers in the office<o:p></o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i><span style=""> </span>6. personally written fax<o:p></o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i><span style=""> </span>7. an obvious form letter or fax<o:p></o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i><span style=""> </span>8. personally written e-mail<o:p></o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i><span style=""> </span>9. an obvious form e-mail <o:p></o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i><o:p> </o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i><br /></i></p><p class="MsoNormal" style="margin-left: 0.25in;"><i>In order of MOST to LEAST effective, these are the kinds of people who contact legislators<o:p></o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i><o:p> </o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i><span style=""> </span>1. government officials<o:p></o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i><span style=""> </span>2. constituent organizations or corporations (entities in the legislator' home district/state)<o:p></o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i><span style=""> </span>3. individual constituents (voters in the legislator's home district/state)<o:p></o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i><span style=""> </span>4. major international, national or regional organizations or corporations<o:p></o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i><span style=""> </span>5. little-known international, national or regional orgs. & corps.<o:p></o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i><span style=""> </span>6. non-constituent individual Americans<o:p></o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i><span style=""> </span>7. foreign individuals, or foreign orgs. & corps. <o:p></o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i><o:p> </o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i><br /></i></p><p class="MsoNormal" style="margin-left: 0.25in;"><i>This may of course vary with the circumstances of the issue at hand, but it's a good rough guide.</i></p></blockquote><p class="MsoNormal" style="margin-left: 0.25in;"><i><o:p></o:p></i></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal"><br /></p><p class="MsoNormal">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.<span style=""> </span>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).</p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal"><br /></p><p class="MsoNormal">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.<span style=""> </span>So I would expect that a personally written fax is probably the way to go.</p> <p class="MsoNormal"><br />The House provides an Internet based method of communicating that is probably just as effective as a personally written fax.</p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal"><br /></p><p class="MsoNormal">I noticed that being contacted by constituent organizations or corporations are considered more effective than individual constituents and even more effective than national organizations.<span style=""> </span>So what would a constituent organization for Huntington’s disease look like?<span style=""> </span>How would I go about building one?<span style=""> </span>What would it cost in the way of time and money to build one?<span style=""> </span>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.</p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal"><br /></p><p class="MsoNormal">Anyway, I sent my “vote for stem cell research expansion” to my Congressman.<span style=""> </span>It looks like I should fax it to my Senators.</p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal"><br /></p><p class="MsoNormal">I rechecked the status of the resolution and found: </p> <p class="MsoNormal" style="margin-left: 0.25in;"><i></i></p><blockquote><p class="MsoNormal" style="margin-left: 0.25in;"><i>Latest Major Action: </i><st1:date year="2007" day="12" month="1"><i>1/12/2007</i></st1:date><i> Read the second time. Placed on Senate Legislative Calendar under General Orders. Calendar No. 6.<o:p></o:p></i></p> <p class="MsoNormal"><o:p></o:p></p></blockquote><p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal"><br /></p><p class="MsoNormal">Very good, when is THAT scheduled to take place?<span style=""> </span>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.<span style=""> </span>Although there were several links labeled “Calendar” it seems that those pages are only what has taken place, not what is to be.<span style=""> </span>Could it be that our Senate doesn’t know what’s going to happen tomorrow?<span style=""> </span>It seems so.<span style=""> </span>I’ll just need to find a fax machine and send my letter as soon as possible. </p>Steve Irelandhttp://www.blogger.com/profile/06680957401958216645noreply@blogger.com0tag:blogger.com,1999:blog-3809336369264513336.post-49879668478328460542007-01-11T18:03:00.000-06:002007-01-11T18:12:26.222-06:00Researching the House Resolution<p class="MsoNormal">I went to the Library of Congress’ Thomas Web site: (<a href="http://thomas.loc.gov/home/c110query.html">http://thomas.loc.gov/home/c110query.html</a>) <span style=""> </span>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.<span style=""> </span>But being of a curious nature I opened it up to see what it was saying about H.R.3.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i style=""></i></p><blockquote><p class="MsoNormal" style="margin-left: 0.25in;"><i style="">SEC. 509. SPECIAL ORDER OF BUSINESS: STEM CELL.</i></p><p class="MsoNormal" style="margin-left: 0.25in;"><br /><i style=""><o:p></o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i style=""><o:p> </o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i style="">(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.</i></p><p class="MsoNormal" style="margin-left: 0.25in;"><br /><i style=""><o:p></o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i style=""><o:p> </o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i style="">(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></p><p class="MsoNormal" style="margin-left: 0.25in;"><i style=""><br /></i></p></blockquote><p class="MsoNormal" style="margin-left: 0.25in;"><i style=""><o:p></o:p></i></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">I found this interesting. <span style=""> </span>This was just a minor section of House Resolution 6. <span style=""> </span>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.<span style=""> </span>Now I haven’t the vaguest idea of what else is in the bill and I’m not likely to take time to look.<span style=""> </span>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.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">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?)<span style=""> </span>Calling it up, the first thing I noticed that it was introduced on the 5<sup>th</sup> and immediately referred to the House Committee on Energy and Commerce.<span style=""> </span>As usual, I’m behind schedule.<span style=""> </span>Why couldn’t HDSA give me 30 days notice?<span style=""> </span>Just kidding!<span style=""> </span>The real question is “Why has it taken me so long to do this?”!</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">I also learned that this resolution is being presented as an amendment as follows:</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i style=""></i></p><blockquote><p class="MsoNormal" style="margin-left: 0.25in;"><i style="">SEC. 2. HUMAN EMBRYONIC STEM CELL RESEARCH.</i></p><p class="MsoNormal" style="margin-left: 0.25in;"><br /><i style=""><o:p></o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i style=""><o:p> </o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i style="">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:</i></p><p class="MsoNormal" style="margin-left: 0.25in;"><br /><i style=""><o:p></o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i style=""><o:p> </o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i style="">SEC. 498D. HUMAN EMBRYONIC STEM CELL RESEARCH.</i></p><p class="MsoNormal" style="margin-left: 0.25in;"><br /><i style=""><o:p></o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i style=""><o:p> </o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i style="">(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) .</i></p><p class="MsoNormal" style="margin-left: 0.25in;"><br /><i style=""><o:p></o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i style=""><o:p> </o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i style="">(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:</i></p><p class="MsoNormal" style="margin-left: 0.25in;"><br /><i style=""><o:p></o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i style=""><o:p> </o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i style="">(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.</i></p><p class="MsoNormal" style="margin-left: 0.25in;"><br /><i style=""><o:p></o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i style=""><o:p> </o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i style="">(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.</i></p><p class="MsoNormal" style="margin-left: 0.25in;"><br /><i style=""><o:p></o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i style=""><o:p> </o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i style="">(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.</i></p><p class="MsoNormal" style="margin-left: 0.25in;"><br /><i style=""><o:p></o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i style=""><o:p> </o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i style="">(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.</i></p><p class="MsoNormal" style="margin-left: 0.25in;"><br /><i style=""><o:p></o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i style=""><o:p> </o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i style="">(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.'.</i></p><p class="MsoNormal" style="margin-left: 0.25in;"><i style=""><br /></i></p></blockquote><p class="MsoNormal" style="margin-left: 0.25in;"><i style=""><o:p></o:p></i></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">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 <g>.<span style=""> </span>Have you ever been to Minute Maid Ballpark in <st1:city><st1:place>Houston</st1:place></st1:city>?<span style=""> </span>I love that stadium too – but I digress.</g></p><p class="MsoNormal"><g><br /></g></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">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.<span style=""> </span>Most excellent!<span style=""> </span>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.<span style=""> </span>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.<span style=""> </span>I was immediately taken to the committee’s Web site at <a href="http://energycommerce.house.gov/">http://energycommerce.house.gov/</a>.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">Well, this is a bummer.<span style=""> </span>The only thing I know for sure is that Congressman John Dingell is the committee chairman.<span style=""> </span>The site says that they are still determining who is on the committee.<span style=""> </span>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?<span style=""> </span>It looks like I may need to find some “unofficial sites” to learn what’s going on.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"><o:p> </o:p></p> <p style="text-align: center;" class="MsoNormal">~~~~~</p><p style="text-align: center;" class="MsoNormal"><br /></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">Just before I left work for the day I just saw the CNN article on the Stem Cell legislation.<span style=""> </span><a href="http://www.cnn.com/2007/POLITICS/01/11/stem.cell.ap/index.html">http://www.cnn.com/2007/POLITICS/01/11/stem.cell.ap/index.html.</a></p><p class="MsoNormal"><a href="http://www.cnn.com/2007/POLITICS/01/11/stem.cell.ap/index.html"><br /></a></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">Apparently they’re going to pass this thing without my help! <g>.<span style=""> </span>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.</g></p><p class="MsoNormal"><br /><g><o:p></o:p></g></p> <p class="MsoNormal"><o:p> </o:p><br /></p>Steve Irelandhttp://www.blogger.com/profile/06680957401958216645noreply@blogger.com0tag:blogger.com,1999:blog-3809336369264513336.post-84260453291946832642007-01-10T18:18:00.000-06:002007-01-10T18:41:27.229-06:00And what is my Congressman's position? Ack!<p class="MsoNormal">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.<span style=""> I assumed that i</span>f he’s proud of his position on the issue then he would have it posted on his Web site.<span style=""> </span>And there I found it:</p> <p class="MsoNormal"><o:p><br /></o:p></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i style=""><span style=""> </span></i></p><blockquote><p class="MsoNormal" style="margin-left: 0.25in;"><i style="">Carter Comments On Stem Cell Legislation</i></p><p class="MsoNormal" style="margin-left: 0.25in;"><br /><i style=""> <o:p></o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i style=""><o:p> </o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><st1:state><st1:place><i style="">Washington</i></st1:place></st1:state><i style="">, </i><st1:date year="2005" day="24" month="5"><i style="">May 24, 2005</i></st1:date><i style=""> -</i></p><p class="MsoNormal" style="margin-left: 0.25in;"><br /><i style=""><span style=""> </span><o:p></o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i style=""><o:p> </o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><st1:place><st1:city><i style="">Washington</i></st1:city><i style="">, </i><st1:state><i style="">D.C.</i></st1:state></st1:place><i style=""> – 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></p><p class="MsoNormal" style="margin-left: 0.25in;"><br /><i style=""><o:p></o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i style=""><o:p> </o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i style="">"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.</i></p><p class="MsoNormal" style="margin-left: 0.25in;"><br /><i style=""> <o:p></o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i style=""><o:p> </o:p></i></p> <p class="MsoNormal" style="margin-left: 0.25in;"><i style="">"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."</i></p><p class="MsoNormal" style="margin-left: 0.25in;"><i style=""><br /></i></p></blockquote><p class="MsoNormal" style="margin-left: 0.25in;"><i style=""><o:p></o:p></i></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">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.<br /></p><br /><p class="MsoNormal">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.</p><br /><p class="MsoNormal">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? :-)<br /></p><p class="MsoNormal"><br /></p>Steve Irelandhttp://www.blogger.com/profile/06680957401958216645noreply@blogger.com1tag:blogger.com,1999:blog-3809336369264513336.post-5402532769262837422007-01-09T19:51:00.000-06:002007-01-09T20:53:09.698-06:00What to do with an HDSA Alert?<p class="MsoNormal">Yesterday I passed along an HDSA alert without comment.<span style=""> </span>At the time I was obviously wearing my “Information Sharer” hat instead of my new “Hd Advocate” hat.<span style=""> </span>It seems that I’m still trying to adjust the band on the new hat.<span style=""> </span>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.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"><o:p> </o:p>So now that I’ve received an alert what should I do with it?<span style=""> </span>HDSA clearly asked us to take action.</p><p class="MsoNormal"><br /></p> <blockquote>“Please contact your Congressional Representative and Senators TODAY and ask them to support the Stem Cell Research Enhancement Act.<span style=""> </span>For your representatives go to <a href="http://www.house.gov/">http://www.house.gov/</a> and <a href="http://www.senate.gov/">http://www.senate.gov/</a>”</blockquote><p></p> <p class="MsoNormal"><o:p> </o:p><br />My first thought concluded that passage of this bill moves HDSA further along in achieving their mission.<span style=""> </span>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.<span style=""> </span>More research means more opportunities to identify a cure.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"><o:p> </o:p><span style="font-style: italic;"><blockquote>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.<br /><br /></blockquote></span></p> <p class="MsoNormal"><i style=""><o:p></o:p></i></p> <p class="MsoNormal"><o:p> </o:p>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.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">The first thing I did was go to <a href="http://www.house.gov/">http://www.house.gov</a> 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.<span style=""> </span>The result was the representative for my district who is John Carter of the 31<sup>st</sup> District of Texas.<span style=""> </span>I then clicked on his name which took me to his Web site. A couple of clicks later I ended back up at the <a href="http://www.house.gov/">www.house.gov</a> Web site on the page. Maybe I missed something but I should have been directed to in the first place.<span style=""> </span>The page is: <a href="http://www.house.gov/writerep/">http://www.house.gov/writerep/</a>.<span style=""> </span>I think this page, from their perspective, is effective because they have a few tricks in place to reduce automated spam from lobbying groups.<span style=""> </span>So now I know HOW this communication is going to take place.<span style=""> </span>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.<span style=""> </span>So I need to first prepare my message.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"><o:p> </o:p></p> <p style="font-style: italic;" class="MsoNormal">To the Honorable John Carter, ….</p><p style="font-style: italic;" class="MsoNormal"><br /></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">I think I need some coaching on how to effectively write to my congressman.<span style=""> </span>It’s Google time.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">I’m easily distracted and this time is no exception.<span style=""> </span>I stumbled across congress.org and spent too much time bouncing around its pages.<span style=""> </span>I need to get back on track so I made a note to return at a later time.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">Here are some simple tips that I found while bouncing around the Net.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"><o:p> </o:p></p> <ol><li>Include your address and phone number, the date, their address and a salutation something like the following: To the honorable Senator John Q. Politician. </li><li>Include a reference to the bill by its specific number or however it is known.</li><li>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. </li><li>You can write about several issues in one letter but may find it more effective to write a separate letter on each issue. </li><li>If you have any genuine political influence yourself you may want to find a way of making it known as well. </li><li>Request a reply to your letter, which you should always receive regardless. </li><li>Sign and date it.</li></ol> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">But then I came to the Electronic Frontier Foundation’s instructions on how to effectively contact your congressional representatives.<span style=""> </span>Egad! I’ve obviously got a little more studying to do.<span style=""> </span>(<span style="font-style: italic;">Insert pregnant pause here</span>).<span style=""> </span>About 2/3 into the page (<a href="http://www.eff.org/congress/">http://www.eff.org/congress/</a> ) <span style=""> </span>all of the interesting stuff starts (printed out it’s 12 pages long so the really good stuff starts on page 8.<span style=""> </span>Further down the section on “do’s and don’ts” is really sweet stuff for beginning advocates like me.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">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?<span style=""> </span><o:p></o:p></p>Steve Irelandhttp://www.blogger.com/profile/06680957401958216645noreply@blogger.com1tag:blogger.com,1999:blog-3809336369264513336.post-75781441172570760722007-01-08T18:30:00.000-06:002007-01-09T20:55:23.939-06:00It's a Proud Day in Austin, TX<p style="color: rgb(153, 51, 153); font-style: italic;" class="MsoNormal"><span style="font-weight: bold;"></span></p><blockquote><span style="font-weight: bold;">Warning:</span> This is my educational diary and if I actually manage to learn something then my experiences might be both entertaining and educational to others.<span style=""> </span>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.<span style=""> </span>So if you continue to consume this blog don’t complain to the Federal government that there wasn’t a warning label.</blockquote><p></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal"><br /></p><p class="MsoNormal">Before I start on my journey I want to applaud the efforts underway to expand the safety net for those with mental illness in <st1:place><st1:placename>Travis</st1:placename> <st1:placename>County</st1:placename></st1:place> (<st1:place><st1:city>Austin</st1:city>, <st1:state>TX</st1:state></st1:place> area).<span style=""> </span>The support services for the mentally ill in <st1:state><st1:place>Texas</st1:place></st1:state> have been abysmal.<span style=""> </span>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 <st1:city><st1:place>Austin</st1:place></st1:city> 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.<span style=""> </span>Apparently those that could do something about it stepped forward.<span style=""> </span>I think there are some lessons here, so I’ll certainly revisit this.</p> <p style="text-align: center;" class="MsoNormal"><o:p> ~~~~~</o:p></p> <p class="MsoNormal">To begin, I thought a good place to start would be to review the current “State of <st1:state><st1:place>HD Advocacy</st1:place></st1:state>”.<span style=""> </span>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.<span style=""> </span>However there are MANY examples that show where there is a serious need.</p> <p class="MsoNormal"><o:p> </o:p></p> <p style="text-align: center;" class="MsoNormal">~~~~~</p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">“Become an HDSA Advocate!”<span style=""> </span>That is the headline on the HDSA Web site that asks for volunteer advocates.<span style=""> </span>But wait… what’s that next sentence?<span style=""> </span>“Terms and Conditions?” – That seems rather ominous.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">After reading the list of “I agree to…’s”, in a nutshell it says that you can represent yourself as an HDSA advocate but <span style=""> </span>ONLY if you limit yourself to what HDSA permits you to say.<span style=""> </span>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.</p><p class="MsoNormal"><br /><span style=""> </span></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal"><i style="">However, if you’d like to be an HDSA Advocate then you should contact Erin Dorrien at the Huntington’s Disease Society of </i><st1:country-region><st1:place><i style="">America</i></st1:place></st1:country-region><i style="">.<span style=""> </span>Her phone number is 212.239.3430.<o:p></o:p></i></p> <p class="MsoNormal"><o:p> </o:p></p> <p style="text-align: center;" class="MsoNormal">~~~~~</p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">Oh my. <span style=""> </span>A Google search on <span style=""> </span>“Huntington’s Disease Advocacy” is cluttered with references to my all time favorite Web site – the “Huntington’s Disease Advocacy Center” (<a href="http://www.hdac.org/">http://www.hdac.org</a>). <span style=""> </span>However, that Web site that belongs to me and Marsha - my close friend, confidant, and partner in the field of HD information sharing.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">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 <g>.<span style=""> </span>In fact it is exactly that advocacy portal that I expect to see significant improvement on by the end of this year. <span style=""> </span>HDAC has an HD family information sharing focus with an emphasis on self advocacy.<span style=""> </span>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.</g></p><p class="MsoNormal"><g><br /></g></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">It seems that each year we are either compelled to try to energize the HD community or we jump on someone else’s bandwagon.<span style=""> </span>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.</p> <p class="MsoNormal"><o:p> </o:p></p> <p style="text-align: center;" class="MsoNormal">~~~~~</p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">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. <span style=""> </span>Well, I already know Jean’s site is going to be a good starting point for locating HD specific resources.<span style=""> </span>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.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">Well, that’s it for today.<span style=""> </span>Tomorrow I think I’ll spend a little more time on Jean’s site and see where that leads me.</p> <p class="MsoNormal"><o:p> </o:p></p> <p style="text-align: center;" class="MsoNormal">~~~~~</p> <p class="MsoNormal"><o:p> </o:p></p> <p style="font-style: italic;" class="MsoNormal">From a recent HDSA Advocacy Alert -</p><p style="font-style: italic;" class="MsoNormal"><br /></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">Subject: <span style="font-weight: bold;">Advocacy Alert-Stem Cell Research Enhancement Act</span><o:p></o:p></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal"><span style="font-style: italic;">The Stem Cell Research Enhancement Act</span></p><p class="MsoNormal"><br /><span style="font-style: italic;"></span><o:p></o:p></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">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.<span style=""> </span>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.</p><p class="MsoNormal"><br /><o:p></o:p></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">Under current law only stem cells derived before <st1:date year="2001" day="9" month="8">August 9, 2001</st1:date> fall under federally funded guidelines for use in research.<span style=""> </span>None of these lines contain the defective huntingtin gene and will not benefit HD research.<span style=""> </span>The new law will expand the number of stem cell lines available, thereby providing valuable resources to researchers and promoting scientific discovery.</p><p class="MsoNormal"><br /><o:p></o:p></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">The proposed law also sets strict requirements and guidelines for how the stem cells are collected and ensures that:</p><p class="MsoNormal"><br /><o:p></o:p></p> <p class="MsoNormal"><o:p> </o:p></p> <ol><li>Embryos used to derive the stem cells were originally created for fertility purposes and are in excess of clinical need;<o:p></o:p></li><li>The individuals from which the embryos are created have determined that they will not be implanted and therefore these embryos would be destroyed; and<o:p></o:p></li><li>These individuals have provided written consent to derive stem cells from these embryos. <o:p></o:p></li></ol> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal"><br /></p><p class="MsoNormal">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.</p><p class="MsoNormal"><br /><o:p></o:p></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">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.<span style=""> </span>For your representatives go to <a href="http://www.house.gov/">http://www.house.gov/</a> and <a href="http://www.senate.gov/">http://www.senate.gov/</a></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal"><o:p> </o:p></p>Steve Irelandhttp://www.blogger.com/profile/06680957401958216645noreply@blogger.com0