ONE STEP CLOSER!!! Genetic privacy!!!

[Lisa Salberg]

WASHINGTON, Jan. 17 — President Bush on Wednesday urged Congress to pass long-stalled legislation to safeguard genetic privacy, a measure experts say would encourage millions of Americans to undergo testing that could lead to prevention and treatment of cancer and other diseases.

“If a person is willing to share his or her genetic information, it is important that that information not be exploited in improper ways,” Mr. Bush said at the National Institutes of Health. “And Congress can pass good legislation to prevent that from happening.” He added, “We want medical research to go forward without an individual fearing personal discrimination.”

For years, scientists and patients’ advocates have pushed for legislation barring employers and insurance companies from discriminating based on the results of genetic tests. A so-called genetic discrimination bill passed the Senate unanimously in 2003, but died in the House.

The bill was reintroduced in the House this week. With Congress now under Democratic control, the bill’s backers are optimistic . They include Dr. Francis S. Collins, director of the National Human Genome Research Institute at the health institutes, who participated in a roundtable discussion with Mr. Bush on Wednesday.

Dr. Collins said Mr. Bush’s statement, along with the possibility of Congressional action, “gives us renewed hope that all Americans will finally receive the protections they need to benefit from gene-based medicine.”

[Burton Borrok]

And where does stem cell research fit in this wonderful scenario? Are we going to spend millions to identify genetic abnormalities and nothing to offset it?
Burt

[Lisa Salberg]

Burton,
One has nothing to do with the other. Passage of the genetic non-discrimination act is one of the most important moves forward to those with a genetic condition and will open the doors for thousands of people to benefit from testing.
There is no connection to stem cell research in this bill nor should there be, one has nothing to do with the other.

I believe, as do other in involved with this important legislation, that Bush made this statement because he is going to encourage passage during the state of the Union address on Tuesday night. Personally I do not like the current administration, but that does not mean that once in a while I do not agree with something Bush says, those who know me well know how hard that was for me to type.

CALL your congressmen and senators this week and encourage passage of the genetic non-discrimination act!!!
Thanks,
Lisa

[Burton Borrok]

Actually Lisa,
I am not against such legislation. In actual fact, with the laws already in force protecting a person’s medical privacy, I think at least the greatest part of this bill is redundant. That does not mean however that I am not for the bill, as I believe we need all the protections we can get, especially now when they are already listening to our phone conversations and reading our mail without judiciary approvals.

I brought in the stem cell research factor because I believe it holds the greatest possibilities for people with genetic, and other, conditions which might benefit from such research, and this the Bush administration is firmly against.

Just supposing, with stem cells, it would be possible to grow sections of the heart which would be free from the genes which cause HCM. This condition would then be curable. Along with that, my kidneys are all but dead and my lungs are also in bad shape. I certainly would love to see some progress in the regeneration of these organs – I certainly would. As you are fighting for protection from gene disclosures I am fighting for stem cell research. Both are important and I would like to see both implemented.
Burt

[Lisa Salberg]

Burton,
Apples and Oranges my dear... both are good but different ;-)

Currently there are no protections in place for those who carry a gene yet have not overt 'disease', thus our children and family members have no protection while those of us with full blown 'disease' have protection.

Do I personally think that stem cells will offer a cure for HCM, no at this point I do not. Why... because we have too many cells and stems cells can not change the cells that are there, but they can replace cells that are not functioning.

I do wish we could use stem cell technology to cure other diseases... that in the long run will help us get to answers for MANY MANY conditions sooner.

Today the genetic non-discrimination act seems close at hand - this is great news... tomorrow.... who knows but lets work to bring this one HOME!

AGAIN - call or write your congress people Monday!!


Best to all,
Lisa

[Lisa Salberg]

Sample letter to send to your REP!
GET ACTIVE!!
Here are some sample letters. Be creative and add a personal touch ..but send a letter!

Thanks,
Lisa


House Letter:

January __, 2007

Dear Representative Slaughter,
Representative Biggert,
Representative Eshoo,
Representative Walden,

Thank you for your leadership on the Genetic Information Nondiscrimination Act (GINA). This bill will benefit every American and directly improve the lives of those concerned with the misuse of their genetic information in health insurance and employment decisions.

Introduce your organization and tell about why GINA is important to you.

The current lack of federal legal protections against the misuse of genetic information has restricted individuals’ access to health information and clinical trials. Fear of the misuse of genetic information limits access to genetic tests. Refusal to utilize effective genetic tests hinders the ability of individuals to learn important medical information, which they could proactively use to manage their health. Fear of discrimination also causes a large number of people to opt out of clinical trials. This lack of participation in research has a negative impact on researchers, clinicians, and industry, slowing the research and development process for targeted drugs and treatments. In order to fully promote personalized medicine and the use of genetic information in healthcare, we must pass GINA legislation.

Thank you once again for your foresight and bold leadership on this issue. We look forward to working with you to have the GINA legislation pass swiftly.

Sincerely,


Senate Letter:

Sample letter 2 — Senate


January __, 2007

Dear Senator Kennedy,
Senator Enzi,
Senator Snowe,

Thank you for your leadership on the Genetic Information Nondiscrimination Act (GINA). This bill will benefit every American and directly improve the lives of those concerned with the misuse of their genetic information in health insurance and employment decisions.

Introduce your organization and tell about why GINA is important to you.

The current lack of federal legal protections against the misuse of genetic information has restricted individuals’ access to health information and clinical trials. Fear of the misuse of genetic information limits access to genetic tests. Refusal to utilize effective genetic tests hinders the ability of individuals to learn important medical information, which they could proactively use to manage their health. Fear of discrimination also causes a large number of people to opt out of clinical trials. This lack of participation in research has a negative impact on researchers, clinicians, and industry, slowing the research and development process for targeted drugs and treatments. In order to fully promote personalized medicine and the use of genetic information in healthcare, we must pass GINA legislation.

Thank you once again for your foresight and bold leadership on this issue. We look forward to working with you to have the GINA legislation pass swiftly.

Sincerely,


Copyright © 1995-2006 Genetic Alliance, Inc. All rights reserved.Privacy Policy | Health Disclaimer

[mantrashak]

It may be possible to grow sections of the heart, or even an entire heart, that was free from HCM. But this wouldn't alter your genetic makeup. Isn't there the possibility (or even probability) that the new, HCM-free heart would develop HCM once it's been implanted? I suppose there's always the option of some gene therapy program, but that's another issue.

As for genetic privacy... again I'm not so sure. If I take out an insurance policy, don't declare my HCM and they discover after I make a claim that I knew about it all along, my policy would be declared null and void. Quite rightly too. I think there are times when employers etc. also need protection from employees!

I have HCM and I really don't have a problem with letting other people know that I have it. And sometimes we do have to accept our limitations. I am against discrimination - but that includes positive as well as negative discrimination.

[miss.anna]

This too fascinates me; both the stem cell and genetic research. If one day one could grow their own heart it may lessen the possibility of the body rejecting the organ; if that is still the case now with heart transplants as I haven't crossed that barrier yet. I'm starting to read up the next several months.

[Lisa Salberg]

The law in this area is clear in the USA - if you have Insurance coverage and move to a new plan (ie change jobs) and do not drop coverage for 63 days then no pre-exsisting conditions can be held against you. If you have no coverage then purchase a new plan or get it from an employer then pre-exsisting clauses can limit the claims paid out for that type of care. However at some point, normally after one year the pre-exsisting issues is gone and must be covered. Group plans are different then privately held plans and can vary greatly.

With regard to future treatments via stem cells and regeneration of hearts out of the body - simply stated not now and likely not in our life time, but likely in our childrens lives something will come of this. For now better treatments and identificiation is critical.

[miss.anna]

Well, it still interests me. Even if I never get to see it done. Sighs. However, better treatment; I'm all for at least something.

[Toogoofy317]

actually,

I think the stem cells are a lot closer than you think. If you allow the research to occur. I was reading a paper just the other day where scientist have altered a HP laser printer to print 3-d images of live cells and they survived the "printing" process if you will. Also, adult stem cells have been able to create the automaticity that are critical in cardiac cells. So, once the proper scafolding for a heart model is created then I believe a non rejectable heart could soon follow.

They are already taking stem-cells and injecting them into the heart and some regeneration has occured allowing some symptomatic relief.

So, Yeah I think you could see this in our life time. My goal is to see that some of this will occur. so, cross your fingers I get accepted into the U of M health science program. And if all goes well I will pursue an MD-PHD in cardiovascular physiology and bio-medicine.

Mary s.

[Pam Alexson]

Although this thread has lead down a different road I will add this info as many are talking about stem cell progress. Please see link more more info about a particular individuals journey.

http://the.honoluluadvertiser.com/article/2006/Jan/23/ln/FP601230356.html

aqnd here is an earlier story about Do Ho's journey:

http://www.usatoday.com/life/people/2005-12-06-don-ho-stem-cell_x.htm?POE=LIFISVA

Pam

[Lisa Salberg]

The promise of treatment with Stem Cells is a reality for those with other forms of cardiomyopathy such as noted above with Don Ho, nonischemic cardiomyopathy. In HCM we have too many cells and they are formed incorrectly so adding cells will not help the heart. There is a chance that for those with end stage HCM this treatment may hold some promise, but still there are many bridges to cross until we get there.
KEEP HOPING!
Lisa

[Pam Alexson]

So correct you are Lisa.

I think many times we as individuals do not identify the vast differences between ischemic cardiomyopathy in which genetics may have predisposed someone to coronary vascular disease that then led to pump failure and the very difference that an HCM heart with cellular dssaray, genetically based, presents with. Our hearts pump well until they progress to dilated cardiomyopathy; end stage and pump failure.

Don Ho specifically had the coronary vascular issues that could lead to the stem cell implant success that has helped to strengthen and give his poorly pumping heart a little more umff.

Thanks for making this clearer for everyone.

Pam

[mantrashak]

I think there are a number of issues that the hearts of people with HCM have to deal with.

Due to the extra muscle, the cavity of the heart is decreased, so there's less space for the blood to fill.

The extra muscle can make the arteries narrower, forcing the heart to work harder to pump the blood out of the heart.

The extra muscle makes the heart less efficient as the walls become more rigid.

On top of that there may be other issues, like problems with electrical conduction and obstruction of the outflow.

Stem cell therapy may prove useful for people with hearts that have been damaged by heart attacks or DCM. HCM is a different problem - the muscle structure of the heart is irregular. No amount of stem cell therapy will fix that.