What's wrong with this picture?

[barbara]

Maybe you don't agree with me, but I am really disgusted by the lack of progress in the US concerning stem cell treatment. The House can vote to use $50 billion dollars to fight certain diseases, one of which is very preventable in most adults, and yet it can't get anything jump started to save and improve the lives of millions of people suffering from diseases that they have no control over. I agree that the spread of malaria and tuberculosis and HIV is a serious problem, but so is the chronic and terminal disease many of us live with daily. I received this notification today. Contact your representatives today and demand the treatment that we deserve in this country. I am outraged that I have to wander around the world getting stem cell therapy, paying my own way as an experimental patient.

Recent House Votes
Tom Lantos and Henry J. Hyde United States Global Leadership Against HIV/AIDS, Tuberculosis, and Malaria Reauthorization Act - Vote Passed (308-116, 7 Not Voting)

The House voted to authorize $50 billion between 2009 and 2013 to help fight the international spread of HIV/AIDS, tuberculosis and malaria.



Here is what I sent to my congressman today:


Congressman Perlmutter, I was upset to learn of your support of the $50 billion dollars HIV/AIDS, tuberculosis and malaria reauthorization Act when I haven't seen any real support of stem cell therapy for those of us who live in the United States who suffer from chronic and terminal diseases. I had to leave the country to have treatment. I had umbilical cord stem cell therapy which has proven very safe and has been in use since the 1950's. I am not talking about allocating more funds for research into embryonic stem cell therapy on rodents. I am talking about funds to get the FDA (which evidently is under quite a bit of fire lately) off its pharmaceutical ties duff and get these therapies approved and NOW. The U.S. is losing ground on this issue and people are having to travel abroad for something so simple they should be able to get it at their doctor's office. I would like to meet with you in person to discuss this matter and have written to you before and got no response. I want to know where you stand.

 

[zar]

Malaria,TB,COPD

Barbara,
Because I have suffered with all three of these diseases,
After emigrating to South Africa and living in Southern Africa for 32years.I can tell you that when I suffered with malaria.in 1 week I lost so much weight (down to 27kgs) and nearly died.Malaria is not a disease I would wish anyone to contract.
I was lucky.I only had it once.Because I am European and could afford the best Doctor and medication.
Black Africans(there are also white) live on a diet of maizemill which is mixed with water.Some of them cant afford to feed themselves once a day,and for sure,do not have money to buy the bestmedication.
Some of them become immune to a degree from malaria, if you can call having a temperature and a headache most of the time, immune?
Get rid of the mosquito,and there will be no more malaria,it can be done and should be.
When you are putting sugar in your coffee,think there is someone working in the sugar cane field.One of the worse places.
Mosquitos love it there.
TB,
Because of people been able to travel more now than ever before legal or not with no health checks.TB has incresed in the west My family and I had to have a good bill of health before we even left the UK.
How did I contract TB? your guess is as good as mine.
I was 40years old in the prime of life(I think)never having so much as a cold since having malaria 10 years before(30)
You can contract TB from someone spitting ,choughing infectious droplets.It attacks the lungs,but much quicker than COPD
With in a few days I was a bag of bones ,eyes in the back of my head (so I was told,to ill to care).Doctors fighting to save my life (twice).I must be like a cat.
I was given isoniazid which is a drug for TB (not expensive)but did leave me with peripheral neuropathy, which I will have for the rest of my life,but I cope with it ok.
In hospital for 3 months and 3 more months treatment after.
Because of a lack of education and trying to using tribal methouds some people arrived at the hospitail to ill to be saved
When I was a young boy, there use to be signs.saying you would get a fine if you were caught spitting.
How many sports people, and then again the coaches, spit when they are just sitting on the bench?.
Children like to follow and do the same as their favorite sports person,so they will learn to spit too.
I have had COPD for 11years and have not suffered no way near what I did with malaria and TB.Maybe I have been lucky as my COPD has been stable for 5years.I am not on O2 and only use 3 inhalers.FV133%
50 milliom is not much to help some of the people suffering in the world.
Better than spending 3 trillion on death and distruction in the persuit of a lie.which will take years if not genarations to put right

How much stemcell research would 3 trillion buy?

 

[barbara]

You missed the intention of my post

Zar - I almost did not post this because I do not want the forum to become a political arena, however, the amount is not 50 million dollars, it is 50 billion. I am simply pointing out that many people are suffering here in the U.S. also. I have known a couple with malaria who contracted it in World War II and had it for the rest of their lives. Both men led fairly normal lives, with occasional bouts which is not what some people get to do with other chronic and terminal diseases. This post is not to compare who is suffering more, but it is to question why the U.S. is so intent on spending billions away from home when its own citizens are not allowed to have safe stem cell treatment here. It is not to get people riled up about the war. I am not talking about more research. If over 86 types of diseases are being treated legally here in the U.S., then why not the rest? What is the hold up is what I am asking. If it is money, then I think there is an obligation to allocate some for our own people to get stem cell therapy approved by the FDA. The entire thing is senseless. Again, this post is not to say that any of the diseases that are mentioned are not of significant importance in the world and individually, it is a stand about the US needing to spend some money at home.

 

[Jane]

What is wrong with this picture?

Barbara,
I agree with you whole heartedly. Orisis in Maryland has received a $126 million contract from "our" Department of Defense to stock pile for Homeland Security their stem cell product to combat radiation damage. If our government can have access to these products why can't we?

 

[zar]

No Entry

Barbara,
I agree with you 100% about not using the forum as a political arena.
I am afraid that when you talk about what any country spends, it dose become polidical because politicians are in charge of our money.
On one of the other forums(you know the one)they are always closing the threads down.They start talking about pensions, medical care etc.
Not because of the different political views,but because people start to insuilt each other,then they want to know why it was closed.
We on this forum,do not insuilt each other,lets keep it that way.
End of subject.

 

[barbara]

This is a friendly forum, I agree.

I do know the other forums and I feel like we do treat each other with respect on this one. I appreciate your comments Zar and agree that we can have discussions without sinking to name calling, etc. I found what Jane posted to be extremely interesting. One of the reasons is that treatment is being withheld from the public and yet the government obviously thinks enough of stem cell treatment to contract with Osiris. I was told recently by a knowledgeable stem cell doctor that the government is keeping a lot from us when it comes to this subject. The doctor said that the public needs to demand a change in policy and that umbilical cord and adult stem cell therapy should be available now. Why are only certain diseases being treated legally here? There is a big cloud over the entire subject and I personally see it as an issue that is very tied to the large pharmaceutical companies. Some of this was exposed in Reader's Digest last month when an article was published about the problems at the FDA.

 

[Jane]

I was under the impression that this forum was to inform and that is what I was trying to do. Not to become political. There are far too many different kinds of stem cells in study now for this to be political, just know that WE must advocate for ourselves. I am not only still interested in treatment for COPD for others but for heart as well for myself and Maryland is not far from my home. I feel that it is morally wrong for Osiris to be given the go ahead for some but not for all. Political? Maybe

 

[barbara]

Jane - Your post got me invigorated again

Jane - I don't think what you posted was political. Zar is right too, in that there is politics in everything. In the case of Osiris, it is political because the government has contracted for the cells, but your post is certainly not one I would call politically motivated. There is a difference. My point is that I don't want the forum used for personal political agendas. I could rail on forever about animal rights which is dear to my heart, but this forum is for stem cell discussion and issues pertaining to it. I agree that we have to start making some waves to be heard. This is wrong for Osiris to be given this contract by the very same government who is denying us treatment citing all sorts of moral issues as well as health issues (don't forget we need years of clinicals and testing on those poor rats for this to be safe). I am tired of these excuses. I think there is a major cover up going on. There is no denying that stem cell treatment is going to be able to help millions of people. This forum is one of the few forums that I am aware of that welcomes stem cell discussion. Other forums do not allow posts that mention stem cells and if you happen to get by the censors, it is only so they can maul you like a lion with a warthog. They seem to get some kind of enjoyment out of it and always are ready to tell you all about their version of stem cell treatment like you are a complete idiot. I am going to focus on some very strong letters to my congressional representatives. I have tried to contact the presidential candidates and that is nothing short of a joke at this time. We all need to speak up loud and clear. We are getting the short end of the stick and it is time to take action.

 

[yorkere]

A Short Reminder Regarding Non-Umbilical Cord Stem Cell Therapy

Barbara, et al:

Here's what I've learned: If stem cells and/or other like elements are taken from a patient, and injected or implanted back INTO that same patient, there are no legal blocks or restrictions such as FDA requirements for 5 year long double-blind-double-crossover stage 1,2, and 3, etc studies.

As an example, check out the below I just found:

Reported April 10, 2008
Healing Tendons

MENLO PARK, Calif. (Ivanhoe Newswire) -- Medical discoveries continue to push the boundaries with robotic body parts and robots that can perform surgeries; but some researchers are uncovering breakthrough treatments by using nothing more than what is already in your body.

Most days, you'll find Pat Brogan on the tennis court. "Tennis has been something that's been with me my whole life," Brogan told Ivanhoe. A bad case of tennis elbow has sidelined her more than once. "I've had tennis elbow so many times over the years that it was debilitating," Brogan recalls. "I couldn't even lift my purse up it got so bad."

After failing several treatments, Brogan found Dr. Allan Mishra, who's using platelet-rich plasma, or PRP, to heal injuries. "The concept is actually ridiculously simple," Allan Mishra, M.D., a clinical assistant professor at Stanford University Medical Center/Menlo Medical Clinic in Menlo Park, Calif., told Ivanhoe. "The power to heal yourself comes from within."

With a simple blood draw, Dr. Mishra separates PRP from other blood components using a special machine. It's then re-injected into the injured area. PRP contains growth factors that trigger tissue regeneration. "Your own body has developed the ability to take care of itself, and we're just simply trying to concentrate or maximize that ability," Dr. Mishra explains.

Studies show PRP is 93 percent successful -- slightly better than surgery. Dr. Mishra will soon test PRP to heal damaged cartilage, and it could also help degenerative disc disease in the back. "If we could rehydrate the disc and have that last over time, that would be a dramatic improvement over what's available right now," Dr. Mishra says.

The one-time treatment cured Brogan's elbow pain. "Six weeks and I was fully back and never had another ounce of pain again in that location," Brogan says. She's now hoping PRP will do the same for her other elbow.

PRP helps stimulate healing, so results are not immediate. Dr. Mishra says patients often notice effects after four weeks and should be fully recovered within three months. The cost of PRP is about $2,500. Compare that to the average cost of surgery, which is up to $15,000. Right now, there are only a handful of doctors performing this procedure in the United States.

FOR MORE INFORMATION, PLEASE CONTACT:
Allan Mishra, M.D.
Stanford University Medical Center/
Menlo Medical Clinic
Menlo Park, CA
(650) 498-6535
info@totaltendon.com
http://www.totaltendon.com
http://www.apexprp.com

FWIW....

 

[barbara]

Good article - Thank you

This may be why Dr. Steenblock says that there are 86 diseases being legally treated in the U.S. at this time. They may all fall into this category. Thanks for a good article. If you saw Karl's last post, he said his doctor was offering him treatment using his own cells and he questioned how this could be legal. The article you sent says that only a handful of doctors are performing this procedure and therein may lie another problem. Many doctors would much prefer to make $15000.00 for something they are trained to do rather than have to learn a new procedure and only make $2500.00 for doing it. Just my two cents again.

 

[yorkere]

Your Last Statement is Correct!

You stated: "Many doctors would much prefer to make $15000.00 for something they are trained to do rather than have to learn a new procedure and only make $2500.00 for doing it", I'm convinced is quite correct.

 

[Lee]

agree

I also agree however I think one of the big reasons doctors don't use a new procedure is due to the high cost of malpractice insurance.

 

[zar]

couch potatoes

...... I am going to focus on some very strong letters to my congressional representatives. I have tried to contact the presidential candidates and that is nothing short of a joke at this time. We all need to speak up loud and clear. We are getting the short end of the stick and it is time to take action.

barbara,
I dont know if you can remember a post of mine not so long ago,about, Other Pioneers(not stem cells)
Well I thought it would be a good idea to post it on the other forum.
Because it is "International "which I realize now it only gets a responce from four countries?.I did sugest that it would be a good idea if in some way the fourm could except signtures from people from around the world.in support for people like us (incurable at the moment)to be given treatments now, like the other pioneers.Not to wait 10 or 20 years.
Then they could be sent to the powers to be.
"Many people can speak with one voice" right.
Well I though my thread would be bussing with replies: great,fantastic, pages,and pages of ideas etc.No such luck.
I did get one reply,a woman,saying when can I start,(future pioneer?).
The rest( 5 or 6) happy for someone else to do what they can.
But they wont be stepping up to the plate.
Just complain about their illness,ever day and cry for a cure.
God help them that help themselves(and others).
My mine boggles.

 

[barbara]

Power in numbers

This is getting to be an interesting and food for thought thread. Lee has made a good point about malpractice insurance although I imagine it is high for the more expensive procedure as well. Zar - There is more power in numbers. What you describe on the other forum however doesn't surprise me a bit. There seems to be an attitude of go ahead and leave me alone to complain. Let me know after you have done all the work how I can get in on it. It is very discouraging. I wonder if there is a possibility of setting up some kind of petition on this forum. I will ask our administrator.

 

[Jeannine]

Zar and Barb

A good start would be for the Pioneers to dedicate a topic to "How to Contact your Congress People"

Maybe if enough people were to raise the issue and even mention this forum in their letters to their Congress people it might get some members of Congress interested.


I will ask our Administrator for his opinion on how we could set up something.

 

[Jane]

Since I opened this up I am going to put out an idea. We need one or two celebrities, a Michael J. Fox, Parkinsons; a Montell Williams, MS. They have been very outspoken before and now they need to step forward and get on this bandwagon. Do any of you out there know of others that have the moxy to contact their congressmen? We already know that a "cure" will take money out of the pockets of the big Pharma industry and they have a strangle hold on congress. Right now we need to put pressure on. A Petition might get some attention but it will take thousands on signatures and I am told that individual letters get more attention.

There will also be a turff war with physicians for it will take money out of thier pockets. Example: a new cancer procedure done at my hospital. The marketing person called on a physician and he said "what are you trying to do take away my business"? This is what we are up against.

My last visit to my cardiologist brought forth that he knew about the procedures but was not convienced. I will continue to work on him. He is young and the fact that he knew tells me that he is keeping up.

Maybe a better idea....get an investigative report onto this subject and get national media attention.

Can you imagine how much money access to stem cell treatment would save the insurance industry?

Let your imaginiation guide you....you are pioneers remember!

 

[barbara]

Let's get fighting mad

Jane, When I started this thread, I was mad. I still am that progress is so slow. The thread is now growing into a great discussion of just what can we do. If anyone reads this forum and has ideas or knows anyone that does have celebrity status, we would love to get the ball rolling. I have decided to actually mail my comments rather than e-mailing. I got a response from the Governor of Wisconsin (this state is very pro stem cell research) and it did say that he only responds to actual letters, not e-mails. Let's turn this thread into one where ideas can be generated. If we don't do something, we have given into the mighty dinosaurs that roam the medical world, politicians and the pharmaceutical companies. Stem cell therapy needs to be made available for people that need it. If what Jane posted doesn't bother you, than do nothing. If it bothers you, then let's join together and start taking action starting with our own representatives on every level. You can Google them and get their addresses or if you wish to e-mail, there are e-mail addresses available for most government representatives. You could even e-mail one letter to a group of individuals. If you want to post your letter and addresses for others, please feel free to do so. Inaction is a killer.

 

[Jeannine]

Jane

I contacted Michael J Fox's foundation, Leeza Gibbons (whose mother had Alzheimer's and is on the stem cell board in CA) who was nice enough to send the information to Gov Schwarznegger who did reply to my email which I posted here several months ago. I also sent an email to Gov Romney's wife Ann (MS) and she also responded which I posted here as well.

I have since lost all of my emails so I can't post it again.
Barb may have copies.

 

[barbara]

Searching on the forum

Fortunately, nothing is lost on the forum. To find both posts, simply do searches using the words Romney and Schwarznegger. Mrs. Romney suffers from MS and the post is in the MS section. The other post is in Support and Announcements. Even though it may be a standardized response from the California Governor, just to get a response is encouraging. Many times, I get no replies or something canned like you must be a resident of this state to contact Governor so and so. Good work Jeannine.

 

[zar]

When there is the will there is a way (here's one way)

My manifesto by Jamie Oliver

For the past couple of years I've been campaigning to ban the junk in schools and get kids eating fresh, tasty, nutritious food instead. Without your support for the Feed Me Better campaign we wouldn't have got the commitment from Tony Blair for new school meal standards and ?280 million to start sorting out the problem.

In my new programme, we show that parents are key and without cooking skills, kitchen facilities and political support on the ground it's going to be very hard to make lasting improvements.

During the course of filming I spoke to the Prime Minister and he committed more longer term funding for school food. I don't want to sound ungrateful, but the amounts are tiny when you divide it up between all the schools in the country ? Nora only gets ?2,000.

Local and national government need to come up with a ten-year strategy and some real money to re-educate people about proper eating habits.

Big love
Jamie O

Jamie Oliver is a top chef/restaurateur