Help

Jasmine · 10-23-2004, 07:37 PM

Can anybody please advise me on how to start a Fund Raiser? Can we do it online too? My husband has ALS and he's dying quickly. I need your help before it's too late. For us, Dr. Huang's Stem Cell surgery in China is a very big hope, we would love to do it, we just don't have the money to do it. I need to know how to come up with the money as soon as possible. I need your help. I can't afford to lose my husband. He's everything I got. He's way too young . . . .

Jasmine

chae wolterbeek · 10-23-2004, 11:20 PM

Jasmine,

Inquire with the following organization, perhaps they can provide guidance to raise fund. www.transplantfund.org. I believe they can provide guidance to all catastrophic medical truama, not just organ transplant.

poonsuzanne · 10-23-2004, 11:24 PM

Jasmine, I am willing and prepared to help! However, you need to consolidate your sources of help. Please consult the moderators here or members who have experience in raising funds in the similar situation like yours. Suzanne

Wise Young · 10-24-2004, 02:49 AM

Jasmine,

I have been thinking a lot about the question raised by your question. It is a real problem because there is no funding of experimental therapies that have not yet been proven to work. In the United States, the costs of experimental therapies are usually supported by government support of clinical trials or the companies paying for the testing of therapies they have developed. In China, unfortunately, there is presently little or no government or industry support of clinical trials. So, while Dr. Huang is doing the procedure, the cost of the treatment is usually provided by the individuals who receive the treatment.

I am not sure what the answer should be. A family can of course try to raise money in their community for the therapy. I know that a number of people here have raised money in their community to support their going to Beijing. I think that the cost of clinical trials should be covered by the government and companies. The reason is that people should not be forced to pay for therapies that may not work. For this reason, I have strongly supported more government funding of clinical trials in the United States. Likewise, I have been helping organize the China SCI Network that would help cover some of the costs of clinical trials in China. Ultimately, when the treatment has been shown to be beneficial and the benefits exceed the risk, the FDA will approve the therapy and insurance can cover the costs.

Unfortunately, all these solutions take time and too much effort. In the case of your husband, time is of the essence. I know how difficult the situation is right now when there is no known therapy that stops the disease. I am not sure that olfactory ensheathing glial transplants will be helpful for ALS. To my best knowledge, Dr. Huang has treated over 30 patients and has observed improvement in some of the patients but some of the patients have died in the hospital and many of the patients have continued to progress with their diseases. It is not clear that olfactory ensheathing glial cells are stopping the progress of the disease. Controlled clinical trials are establish the benefits and risks of this disease.

Regarding fundraising, the best way to raise funds for your husband is from your own community. This is where people know you and your husband. The amounts that must be raised are not so great. A second possibility is for the ALS community to raise funds to support patients going for this treatment and pay for the therapy with the stipulation that the patients be examined by qualified physicians. A third possibility is to raise money through internet. A fourth possibility is what to get or form a local organization to help raise the money. A young girl for cancer, for example established an organization to sell lemonade on the street, and raised over a million dollars to support treatments for herself and others with cancer.

Wise.

Faye · 10-24-2004, 07:08 AM

Dr. Young, I know that the aprox. $20,000 needed, pales in comparison to what the cost would have been in the US, yet I spoke with a good friend of mine who used to be a physician in China and she said in her opinion the procedure was "over-priced" based on the going rates in China.

Though I think Dr. Huang is very caring and really wants to help without craving fame or peer approval, I have sometimes wondered if he may have sizeable monies left over after costs that could be reinvested into more research.
Could you comment on this?

A VOTE FOR BUSH IS A VOTE AGAINST CURE RESEARCH
"We have a chance to take a giant stride forward for the good of all humanity" in the next election. "We can choose between the future and the past, between reason and ignorance, between true compassion and mere ideology."- Ron Reagan Jr.

golanbenoni · 10-24-2004, 07:40 AM

Quote:

Originally posted by Faye:

Dr. Young, I know that the aprox. $20,000 needed, pales in comparison to what the cost would have been in the US, yet I spoke with a good friend of mine who used to be a physician in China and she said in her opinion the procedure was "over-priced" based on the going rates in China.

Though I think Dr. Huang is very caring and really wants to help without craving fame or peer approval, I have sometimes wondered if he may have sizeable monies left over after costs that could be reinvested into more research.
Could you comment on this?

Faye,

This was one of the questions I originally asked Dr. Young. Wise's response was that he does not believe that the costs were high -- and in fact, had this procedure been done in the United States it would be considerably more. Wise felt that the monies are either collected at, or very near cost.

Golan.

Faye · 10-24-2004, 08:41 AM

Quote:

Originally posted by Golan Ben-Oni:

Quote:

Originally posted by Faye:
Dr. Young, I know that the aprox. $20,000 needed, pales in comparison to what the cost would have been in the US, yet I spoke with a good friend of mine who used to be a physician in China and she said in her opinion the procedure was "over-priced" based on the going rates in China.

Though I think Dr. Huang is very caring and really wants to help without craving fame or peer approval, I have sometimes wondered if he may have sizeable monies left over after costs that could be reinvested into more research.
Could you comment on this?

Faye,

This was one of the questions I originally asked Dr. Young. Wise's response was that he does not believe that the costs were high -- and in fact, had this procedure been done in the United States it would be considerably more. Wise felt that the monies are either collected at, or very near cost.

Golan.

If I told you what my Chinese "doctor" friend told me the procedure could be done for in China including associated costs for hospital stay etc., you would indeed be shocked:

She said other doctors in China could do it for $3,000 or thereabouts.
We forget that in many countries price-ranges are more than ten-fold lower than in the US for similar procedures.

A VOTE FOR BUSH IS A VOTE AGAINST CURE RESEARCH
"We have a chance to take a giant stride forward for the good of all humanity" in the next election. "We can choose between the future and the past, between reason and ignorance, between true compassion and mere ideology."- Ron Reagan Jr.

golanbenoni · 10-24-2004, 08:57 AM

Quote:

Originally posted by Faye:

If I told you what my Chinese "doctor" friend told me the procedure could be done for in China including associated costs for hospital stay etc., you would indeed be shocked:

She said other doctors in China could do it for $3,000 or thereabouts.
We forget that in many countries price-ranges are more than ten-fold lower than in the US for similar procedures.

I also raised this issue. Apparently, in China treaments are offered "al a carte". Dr. Huang's treatment seems to be more inclusive, and also involves TCM, and a 6-week stay, including hospital in-patient services, food, etc.

I'm quoting Wise here, if I may:

Quote:

Dr. Wise Young: And for $20,00.00, that's nothing, you know. And I think those are their, pretty close to the actual costs. Now, for Chinese patients, it's a different issue. Chinese patients pay a very low base fee, maybe $6,000.00, and then they have to pay individually for every therapy that they receive and that's the standard Chinese therapy. The insurance just pays the base fee. So that one of the things this, is that you've got a drug that you have to pay for, you've got food, you have to pay for it.

[This message was edited by Golan Ben-Oni on 10-24-04 at 12:06 PM.]

Faye · 10-24-2004, 09:35 AM

Golan, it's a known fact that Americans get charged significantly more than others for the same treatments.

I always paid twice as much for Jason getting his treatment in Poland than someone coming from for example Germany or Austria.

Even those "A La Carte" items are considerably less expensive in China than in the US and would definitely not add up to $14,000 as Dr. Young's explanation would make it be.

Just something to consider in your time of need.

Besides note that I did include Hospital stay and some other associated costs in the figure
quoted by my chinese "doctor" friend.

A VOTE FOR BUSH IS A VOTE AGAINST CURE RESEARCH
"We have a chance to take a giant stride forward for the good of all humanity" in the next election. "We can choose between the future and the past, between reason and ignorance, between true compassion and mere ideology."- Ron Reagan Jr.

Wise Young · 10-24-2004, 10:58 AM

Faye, costs are rising in China. While we might say that costs are tenfold lower in China, it varies tremendously from hospital to hospital, and facilities that are provided. In the typical Chinese hospital, there is just a skeleton nursing staff whose main role consists of handling emergencies and teaching the families how to care for their loved ones in the hospital. Family members come in and provide a lot of the care that are provided by nursing staff in U.S. hospitals. U.S. hospitals are very expensive because their ratio of care personnel to patients is very high. I think that in the coming years, the cost of clinical trials and care in Chinese and U.S. hospitals will converge.

In any case, the cost that Dr. Huang has charged for the OEG procedure, about $20,000 for surgery and a hospitalization of 6 weeks, is all going to the hospital. To my knowledge, the funds are not paying for his time and effort (or that of his staff) on behalf of the patients. People in the United States should not expect the Chinese government to subsidize their care in China. That is one of the reasons why it is so important that we really get clinical trials going in the United States.

Wise.

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10-23-2004, 07:37 PM	#1
Jasmine Junior Member Join Date: Oct 2004 Posts: 7	Help Can anybody please advise me on how to start a Fund Raiser? Can we do it online too? My husband has ALS and he's dying quickly. I need your help before it's too late. For us, Dr. Huang's Stem Cell surgery in China is a very big hope, we would love to do it, we just don't have the money to do it. I need to know how to come up with the money as soon as possible. I need your help. I can't afford to lose my husband. He's everything I got. He's way too young . . . . Jasmine

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10-23-2004, 11:20 PM	#2
chae wolterbeek Member Join Date: Dec 2002 Posts: 86	Jasmine, Inquire with the following organization, perhaps they can provide guidance to raise fund. www.transplantfund.org. I believe they can provide guidance to all catastrophic medical truama, not just organ transplant.

10-23-2004, 11:24 PM	#3
poonsuzanne Senior Member Join Date: Sep 2003 Location: Hong Kong, China Posts: 1,855	Jasmine, I am willing and prepared to help! However, you need to consolidate your sources of help. Please consult the moderators here or members who have experience in raising funds in the similar situation like yours. Suzanne

10-24-2004, 02:49 AM	#4
Wise Young Administrator Join Date: Jul 2001 Location: New Brunswick, NJ, USA Posts: 37,988	Jasmine, I have been thinking a lot about the question raised by your question. It is a real problem because there is no funding of experimental therapies that have not yet been proven to work. In the United States, the costs of experimental therapies are usually supported by government support of clinical trials or the companies paying for the testing of therapies they have developed. In China, unfortunately, there is presently little or no government or industry support of clinical trials. So, while Dr. Huang is doing the procedure, the cost of the treatment is usually provided by the individuals who receive the treatment. I am not sure what the answer should be. A family can of course try to raise money in their community for the therapy. I know that a number of people here have raised money in their community to support their going to Beijing. I think that the cost of clinical trials should be covered by the government and companies. The reason is that people should not be forced to pay for therapies that may not work. For this reason, I have strongly supported more government funding of clinical trials in the United States. Likewise, I have been helping organize the China SCI Network that would help cover some of the costs of clinical trials in China. Ultimately, when the treatment has been shown to be beneficial and the benefits exceed the risk, the FDA will approve the therapy and insurance can cover the costs. Unfortunately, all these solutions take time and too much effort. In the case of your husband, time is of the essence. I know how difficult the situation is right now when there is no known therapy that stops the disease. I am not sure that olfactory ensheathing glial transplants will be helpful for ALS. To my best knowledge, Dr. Huang has treated over 30 patients and has observed improvement in some of the patients but some of the patients have died in the hospital and many of the patients have continued to progress with their diseases. It is not clear that olfactory ensheathing glial cells are stopping the progress of the disease. Controlled clinical trials are establish the benefits and risks of this disease. Regarding fundraising, the best way to raise funds for your husband is from your own community. This is where people know you and your husband. The amounts that must be raised are not so great. A second possibility is for the ALS community to raise funds to support patients going for this treatment and pay for the therapy with the stipulation that the patients be examined by qualified physicians. A third possibility is to raise money through internet. A fourth possibility is what to get or form a local organization to help raise the money. A young girl for cancer, for example established an organization to sell lemonade on the street, and raised over a million dollars to support treatments for herself and others with cancer. Wise.

10-24-2004, 07:08 AM	#5
Faye Banned Join Date: May 2003 Location: Jacksonville, FL Posts: 6,840	Dr. Young, I know that the aprox. $20,000 needed, pales in comparison to what the cost would have been in the US, yet I spoke with a good friend of mine who used to be a physician in China and she said in her opinion the procedure was "over-priced" based on the going rates in China. Though I think Dr. Huang is very caring and really wants to help without craving fame or peer approval, I have sometimes wondered if he may have sizeable monies left over after costs that could be reinvested into more research. Could you comment on this? A VOTE FOR BUSH IS A VOTE AGAINST CURE RESEARCH "We have a chance to take a giant stride forward for the good of all humanity" in the next election. "We can choose between the future and the past, between reason and ignorance, between true compassion and mere ideology."- Ron Reagan Jr.

10-24-2004, 09:35 AM	#9
Faye Banned Join Date: May 2003 Location: Jacksonville, FL Posts: 6,840	Golan, it's a known fact that Americans get charged significantly more than others for the same treatments. I always paid twice as much for Jason getting his treatment in Poland than someone coming from for example Germany or Austria. Even those "A La Carte" items are considerably less expensive in China than in the US and would definitely not add up to $14,000 as Dr. Young's explanation would make it be. Just something to consider in your time of need. Besides note that I did include Hospital stay and some other associated costs in the figure quoted by my chinese "doctor" friend. A VOTE FOR BUSH IS A VOTE AGAINST CURE RESEARCH "We have a chance to take a giant stride forward for the good of all humanity" in the next election. "We can choose between the future and the past, between reason and ignorance, between true compassion and mere ideology."- Ron Reagan Jr.

10-24-2004, 10:58 AM	#10
Wise Young Administrator Join Date: Jul 2001 Location: New Brunswick, NJ, USA Posts: 37,988	Faye, costs are rising in China. While we might say that costs are tenfold lower in China, it varies tremendously from hospital to hospital, and facilities that are provided. In the typical Chinese hospital, there is just a skeleton nursing staff whose main role consists of handling emergencies and teaching the families how to care for their loved ones in the hospital. Family members come in and provide a lot of the care that are provided by nursing staff in U.S. hospitals. U.S. hospitals are very expensive because their ratio of care personnel to patients is very high. I think that in the coming years, the cost of clinical trials and care in Chinese and U.S. hospitals will converge. In any case, the cost that Dr. Huang has charged for the OEG procedure, about $20,000 for surgery and a hospitalization of 6 weeks, is all going to the hospital. To my knowledge, the funds are not paying for his time and effort (or that of his staff) on behalf of the patients. People in the United States should not expect the Chinese government to subsidize their care in China. That is one of the reasons why it is so important that we really get clinical trials going in the United States. Wise.