Exactly Fred you can't compare Pick's Disease to HD. The numbers are totally different. Huntington's Disease effects a much much larger number of families.

So do you suggest everyone keeps Huntington's Disease in their family quiet? If so then my jaw will be hitting the ground shortly.

[www.hdyo.org]

I have to agree and disagree in some way with what everyone has said:

1 - Agree - HD is a horrible disease. I don't just explain it as being similar to Parkinson...I add Alzheimer?s too. To me, the two are worse together than either one separately.

2 - Disagree - At least with HD we have the option to stop the progression. With Parkinson?s and Alzheimer?s you don't know if you are going to get it until you have it. How many people do you know that ask for a test for either one before they are showing symptoms? I do however believe that the only way to stop it at this point is for the government to offer free IVF for all people wanting to have children...free of charge. Why not? It stops the progression of the disease!

Sally that's a great point. It would stop the disease for the generation to come. Obviously it's doubtful the government would do anything like that but I think it's a great idea.

[www.hdyo.org]

When anyone ask me what HD is the only way I can explaine to them so they understand is to tell them is like Alzheimer or Parkinson but much worse. I pray that one day they will find a cure of this horrible diease and in my heart I know they are coming close to that day

What do we want the Government to do? The only thing I'd want from them is a quicker and more objective path to disability and medicare benifits for victims.

I'd like the government to sanction more funding for neuropsych centers so we have place we can take our loved ones for real therapy and help.

The government could fund more university research. But I think they are doing that indirectly already with stroke and brain injury advances.

The cure will likely come from the private sector.

More awareness won't help us in a public forum. I do suggest that we keep private health matters private. My feeling and my experince leads me to believe that public awareness would simply lead to more discrimination, not less, for people at risk and with HD.

Look at some of the other threads for proof of this. In the thread "questioning the "test" at time of discovery" Marsha mentions:

"I know one woman whose husband left her when she tested positive for the marker and then it turned out that she didn't have the gene at all."

There are multiple posts of people who have broken up with someone with HD once they understood it.



Edited 1 time(s). Last edit at 04/15/2008 01:08PM by Fred.

All I'm talking about here Fred is summed up in Bj's comments above your previous post.

"When anyone ask me what HD is the only way I can explain to them so they understand is to tell them is like Alzheimer or Parkinson but much worse."

I would like to live in a world where I didn't have to use other diseases to make people understand ours.

[www.hdyo.org]

I agree with you Matt. HD is very difficult to explain & sum up in just a few words to those who ask. Compairing it to Parkinsons or Althzheimers isn't explanetary enough. It would be great if you could simply say "Huntington's Disease & people were to nod their heads because they 'know' what it is & they would actually understand as they do with those more 'known' illnesses.
People could still keep their secrets if they wanted...But for those who are willing to talk about it....simply saying we have HD in our family would be so much easier than trying to explain & failing because those explantions don't come close enough.

I'm not sure I agree with Fred's leap from public funding to private funding - to medical privacy.

I'm a staunch advocate of medical privacy - AND a staunch advocate of public funding of some research and treatment. I don't see the two as being at all contradictory.

They're entirely different issues. Perhaps if Fred has a reason why federal funding of Huntington's research must necessarilly morph into a lack of medical privacy, I might buy it. I'm simply not seeing it.

What does one have to do with the other?


I can't say that I share Fred's confidence in the cure being found in the private sector.

They certainly have not been inspired to accomplish that, yet.

As Fred readily agrees - the goal of the private sector is profit.

There is no profit in coughing up money for research and cures for a disease that affects so few.

If there were - believe me - the private sector would have been all over this in a flash, and the issue would have been resolved, long ago.

They have not. And it has not.

Perhaps if Fred can give me one significant instance where the private sector has contributed to the cause of HD, maybe I could be sold.

I haven't seen it. And due to the negative "bottom line", I simply can't even imagine it!

Who's gonna work this magic, Fred?

Halliburton, perhaps?



Edited 1 time(s). Last edit at 04/16/2008 12:55AM by JL.

JL,

I didn't say anything about "I'm not sure I agree with Fred's leap from public funding to private funding - to medical privacy."

A couple of points:

1) Government is funding general research at universities and businesses to advance generalized research. The private sector, companies like Lilly and other pharma companies to use it to advance the cures. Last I heard, the US goverment doesn't make asprin or flu vaccines. They buy them from the private sector.

2) 2/3 of all medical research is done by the private sector. It's more efficient since it's profit motivated. Plus, most of the research is done in cooperation with NINDS and similar government agencies. There is no government activity that is working on a cure within the government (thank god).

I think that if we look at this, HD is in a family of diseases caused by a genetic defects. Once someone unlocks the cure to any of them, the research will directly impact HD. No question about it.

My broader point is that HD is a rare disease. There are lots of rare diseases. This one is nasty, but there are a lot of other ones that are very nasty as well that WE don't have a clue about.

We have to support general research and follow as closely as we can any research that looks like it can target and alter genetic problems. We should also support research that works on brain repair.

Anybody that can come up with a cure for strokes will have a product that will be worth untold billions of dollars. And that repair can be applied to HD.

At the same time, anyone that can come up with a cure for genetic disease of anytype can count on the same profit.

Simply because it isn't centered on HD doesn't mean that there are no advances FOR hd.

What we want the government to do is what the private sector can't or won't do well, and that's take care of people with HD financially. We can ask the government to modify the existing systems of Nursing homes to accomidate the younger pHD's. That we can ask for and expect to get.

As for "public" awarness, I come back to the fact that there are hundreds of types of nasty diseases that seek to capture the sympathy and understanding of the people. We are one in a crowd of people screaming for attention.

The public at large are worried about things that can affect them, not some obscure disease like HD or pick's. And while lots of people will embrace and accept HD, my guess and experience is that most will shy away from anyone with HD or at risk for it. So wearing it on your sleeve won't help, and it makes you fall victim to the natural prejudice people have when they understand only a little bit of the problem.

I will say it will go as far as employment rejection, lack of promotion, relationships being broken up, etc.

Picks Disease isn't anywhere near in numbers as HD. I think you are making HD sound more rare than it is.

Once again you are missing my point Fred. I'm not talking about individuals with HD going out and telling everyone they are Hd positive. I'm talking about people knowing what HD is.

[www.hdyo.org]

Fred says: "Look at this objectively. Here is a disease that affects 0.009 % of the population."

This is PRECISELY why I find Fred's scenario of the "private sector" magically being the solution to the problem highly unlikely.

They never have been. Business-for-profit is just that. Their goal (of necessity) is PROFIT. Not philanthropy.



Edited 2 time(s). Last edit at 04/16/2008 03:14PM by JL.

Fred's "couple of points:"

"1) Government is funding general research at universities and businesses to advance generalized research. The private sector, companies like Lilly and other pharma companies to use it to advance the cures. Last I heard, the US goverment doesn't make asprin or flu vaccines. They buy them from the private sector. "

My answer: Do you somehow see aspirin and flu vaccines as having anything to do with HD, Fred? If so, I'm quite missing it!

"2) 2/3 of all medical research is done by the private sector. It's more efficient since it's profit motivated. Plus, most of the research is done in cooperation with NINDS and similar government agencies. There is no government activity that is working on a cure within the government (thank god). "


Fred, I don't deny at all that 2/3 of all medical research might very well be done by the private sector. I agree totally that it might be "more efficient because it's driven by the profit motive".

For SOME diseases/conditions.

Erectile Dysfunction cures have mustered a great deal of funding from for-profit organizations. Why? Duh - because for-profit organizations are headed by - and cater to - a significant percentage of their populace. The most influential being males, of a certain age.

There IS no profit motive that I'm aware of that would entice the "private sector" to invest money in HD research.

And Fred has yet to provide me with one scenario that might work...



Edited 4 time(s). Last edit at 04/16/2008 06:43PM by JL.

deleted



Edited 2 time(s). Last edit at 04/16/2008 03:39PM by JL.

I provided the senerio JL. Read it again.

NO one besides academic types are working on HD in and of itself. To most of them, it's a curious sideline to their main focus, which is likely either alzhemiers or other degenerative diseases.

If you don't see how asprin and HD are compared, get this: The government simply gives money to researchers who present the request. The key is having the resources MAKE the request for funding. HD isn't really a unique disease due to the cause.

There are at least 8 CAG/polyglutamine tract diseases, and more are being identified. The key is to tap into a collaboration of all these diseases and work to make the product more profitable.

Otherwise, you can wait a few more generations.

If anyone wants to read about how we are going to get the cure, I have a three part series on the strategic plan (YES WE HAVE ONE!) on the HDSA site. It's a combination of academic research funding by the government and private donations and CHDI's foundation funded translation research. Clinical trials likely will be funded by the government, private contribution, and/or pharmaceutical companies, depending on the actual product.

Right now much of the work being done by pharmaceutical companies is actually being financed by CHDI because the pharmaceutical companies won't invest at this point.

Part One:
[www.hdsa.org]

Part Two:
[www.hdsa.org]

Part Three:
[www.hdsa.org]

Thank you, Marsha. I much prefer "how we can do it" scenarios - to "the private sector will accomplish it" - directly opposed to "the private sector can't be expected to help at all with HD research, due to lack of a profit motive.".

I still challenge Fred to provide me with one example of where "private-sector" dollars have been expended in significant amounts to benefit HD research or treatment.

Fred - I've read your posts.

I wish Fred would quit implying that if one diagrees with him - one must not have read his posts.

It's quite possible to read your posts, and still disagree, Fred!

I frankly don't agree that HD is not "unique" enough to justify funding.

It's extremely "unique". It's an autosomal-dominant genetic disease, for which there is a definitive test.

How many other neurodegenertive diseases can you say that about, Fred?



Edited 2 time(s). Last edit at 04/16/2008 09:47PM by JL.

It was the same senerio JL. Exactly the same as I outlined above.

Note JL, CHDI is "CHDI, INC" and High Q are ALL PRIVATE SECTOR charities. They are NOT part of the CDC, NIH, etc.

The pharama companyies are being PAID to do that work by the private sector. Marsha wrote -

"Right now much of the work being done by pharmaceutical companies is actually being financed by CHDI because the pharmaceutical companies won't invest at this point. "

Note that the Pharmaceuctical companies" part of that.

So when JL writes - "I still challenge Fred to provide me with one example of where "private-sector" dollars have been expended in significant amounts to benefit HD research or treatment"

THere is the ANSWER to your challenge JL!!!!!

And as for "It's extremely "unique". It's an autosomal-dominant genetic disease, for which there is a definitive test.

How many other neurodegenertive diseases can you say that about, Fred?"

Achondroplasia
Autosomal Dominant Genetic Diseases
Autosomal dominant polycystic kidney disease
Huntington's Disease
Machado-Joseph Disease
Marfan syndrome
MODY diabetes
Osler's disease
Otosclerosis
Tourette Syndrome
Von Hippel-Lindau Disease

Source: [www.cureresearch.com]


Once they can cure one, they will be on the road to curing all.

Usually when the term private sector is used, I think of for profit companies. The public sector is government, of course. Then I also think of nonprofit organizations as separate entities with elements of both. They are private in that citizens band together to carry out a charitable purpose but they are also government sanctioned and regulated in that there must be honesty and openness in the accounting of funds and funds must be used for their stated purpose.


[en.wikipedia.org]



Edited 1 time(s). Last edit at 04/17/2008 11:01AM by Marsha.

And what percentage of the population do these diseases comprise IN TOTAL, Fred.

Not enough to amount to a hill of beans, in terms of garnering funding and support.

That's why I think it's so important to put a "public face" on these generally-unknown diseases.

I don't disagree that research on other diseases might well benefit Persons with Huntington's Disease, as well.

I embrace that.

But it's a damned slow process, just waiting for the crumbs to drop. Especially, now that we're spending trillions of dollars on a war of choice.

Fred says: "Once they can cure one, they will be on the road to curing all."

Fred, as you should well know - advances in "curing" (the more accurate word is "treating the symptoms" of other diseases - may very well indirectly benefit PHDs.

But there will not be a "cure" for HD, until a means is found to halt or reverse damage to that very specific gene at the top of chromosome 4.

Fred, perhaps I didn't explain myself clearly. I don't think that HD is "unusual" merely because it's autosomal-dominant. It's further unique in that it is traceable ONLY to that very specific location on chromosome 4.

There is only one other genetic condition that traces to that particular allele - and I forget its name (many of my books still being packed). It's the opposite of HD, in a sense.

Whereas HD is caused by abnormal "repeats" of the huntingtin gene - this other disease is caused by an abnormal "lack" of the huntingtin gene. A normal presence of the huntingin gene is not only a good thing, but absolutely necessary. Within reason.

This other neuro-degenerative disorder is even LESS known, since it's sufferers tend to die in infancy.

Therefore, I applaud the efforts of those who advocate for HD.

Fred - you seem to be accepting of the phylosophy that "One might be descriminated against, if it's known that they have HD.

Believe me, Fred, no-one knows that better than I.

Unlike you, my family has lived under the threats and the realities of HD for generations.

The only "cures" for HD, Fred - are if science is able to halt or reverse the brain damage caused by it. Since that damage is EXTREMELY localized - I think it hardly likely that discoveries concerning other neuro-degenerative diseases (such as PD or ALS or ALZ) will be likely to unearth a "cure" for HD . An alleviation of the "symptoms", perhaps. But a "cure"? Not likely!.

You may think it's a lost cause to bring attention to medical research related specifically to HD, Fred.

I do not agree.

You've expressed concern about whether a person diagnosed HD+ might be descriminated against in the workplace - or in one's social life.

Well, I've been descriminated against in the workplace - but I don't see the solution as being "secrecy" - but rather, medical privacy. In otherwords, one may safely disclose one's medical status - to the extent that it's necessary - without fear of one's employer abusing that information.

As for social life. Fred, your son has tested positive. Had you not shared that information yourself - I would not be posting it here.

What disturbs me a lot, Fred, is that you seem most concerned about his social life.

Will parents object to their daughter dating your son, if they know he has HD? Will they object to a serious relationship?

While I don't think that any parents should arbitrarily object to their child "dating" a PHD - I have to honestly agree that "dating" can mean a whole lotta things.

Possibly un-protected sex.

Fred, I have to respectfully submit that your son is a teenager. I assume - being the intellegent guy that you are - that you've drilled into him the importance of "safe sex".

Especially in light of the fact that he's gene-positive!

It seems reasonable to me that in the absense of information about his HD statis - he might be at a distinct disadvantage, in terms of making informed choices.