Do We Really Have a Right to Universal Healthcare?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

US Healthcare - The Time for Reform is NOW!

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

• Everyone would have affordable health coverage.


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


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


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


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


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


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


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


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

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

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

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.