Source: About.com
How Stem Cell Therapy Changed One Patient’s Life
By Deborah Leader, RN, About.com
Meet Barbara Hanson – COPD patient and pioneer in the grassroots effort to legalize all types of stem cell therapy for the treatment of COPD in the United Stages. Several years ago, out of sheer desperation, she left the country to undergo stem cell therapy for COPD. This is her story.
Note: The comments and suggestions in this interview do not reflect the opinions of About.com’s Medical Review Board whose members do not recommend stem cell therapy. The interviewee’s comments are not meant to be taken as medical advice and should not replace the recommendations of your doctor.
When were you first diagnosed with COPD?
I got the official diagnosis of COPD in 2006, but was misdiagnosed for several years. I was told I had severe allergies, then asthma, hypersensitivity pneumonitis and finally COPD. At the time of my diagnosis, I was in pretty bad shape. My first symptoms appeared at least 10 years earlier, yet I remained undiagnosed.
At the time of diagnosis, what, and how bad were, your symptoms?
My biggest problem was that I was constantly getting sick with one respiratory ailment or another. I had pneumonia at least three times and spent a great deal of my life on the couch. I live in Colorado, which also means I fight the high altitude. After a plane trip left me very ill with pneumonia, I ended up with an enlarged heart and very little will to do anything. I felt like giving up. I was previously a very active person and being relegated to a sedentary lifestyle was very depressing. In 2006, I had to start using supplemental oxygen 24/7 which, to me, was a life altering event. I had to give up many things that I had previously enjoyed.
What treatment options have you tried for COPD?
Prior to stem cell therapy, I was given various medications and inhalers and was on steroids for well over a year and a half. I ended up gaining 30 pounds which only added to my misery. It was not until I finally got a knowledgeable pulmonologist that I was prescribed respiratory therapy which I think is essential for anyone with COPD. I also am a vegetarian and eat foods that are nutritional and those that tend to help reduce inflammation. I thought I was doing all the right things, but I continued to get seriously ill several times per year. I did eliminate the suspected cause of my hypersensitivity pneumonitis, but it did not relieve symptoms such as shortness of breath or low oxygen saturation levels without supplemental oxygen.
What made you finally decide to try stem cell treatment?
Despair. I also knew that COPD was a progressive illness and that reversal was not possible. Without some kind of miracle, my only hope was that of slowing the progression of the disease, if I was lucky. Once I learned about stem cell therapy, I knew it was something I had to try because it does hold the promise for regeneration of lung tissue.
When did you have your first treatment and where was the procedure performed?
The first treatment I had was in April of 2007. It was supposed to be an umbilical cord stem cell treatment. I knew little or nothing about stem cell treatments when I got my first one. The procedure was done in Mexico. This was before most people had ever even heard of stem cell therapy. I went with another lady that I had met online. When we returned home, we were totally lost. There was no one to talk to about what we had done. The company we went to was no help. My son gave us the Stem Cell Pioneers Forum and we went about learning everything we possibly could about stem cells and treatment. Today our forum is the largest patient moderated forum for stem cell discussion and support for those that have had treatment or are thinking of having stem cell treatment for any disease. We do not want anyone to make the same mistake that we did the first time. We advocate safe stem cell therapy and are quick to expose companies that are not giving safe treatments. I have had several autologous stem cell treatments since my first disaster treatment in Mexico (both my friend and I became quite ill after that first treatment). I have learned so much since the first time and now only deal with trusted doctors that I know. I have had autologous treatment in California, Florida and Mexico.
Did the legality issues surrounding stem cell therapy in the United States influence your decision to try it? Why or Why not?
I am not sure what you mean by legality issues because autologous stem cell therapy without manipulation is legal in the United States. Also, there are many countries in which all types of stem cell therapies are legal. The problem in the U.S. is that without manipulation, most treatments are simply not clinically relevant. In my opinion, this needs to be changed.
At present, I am a patient advocate for the International Cell Medicine Society (ICMS). This grassroots effort was started by a doctor who has decided to challenge the FDA’s ruling that our own stem cells are prescription drugs if they are enhanced in any way. This doctor asked if I would be interested in getting the word out since I am co-founder of the Stem Cell Pioneers Forum and was already an advocate for stem cell treatment. The issue is complicated, but ICMS has developed guidelines for safe stem cell treatments. Doctors who join ICMS must agree to adhere to these strict guidelines for safe stem cell treatment for their patients who want treatment using their own stem cells. There is also a patient registry that doctors must agree to. Patients can be referred by their own doctors to ICMS member doctors for stem cell therapy if this is the desired treatment. ICMS advocates giving the patient and doctor the decision making ability rather than a regulatory agency. This has been working for years with fertility clinics. They have their own guidelines and doctors must work within them. There should be no double standard for stem cell clinics doing the same.
Can you explain what the term “autologous” refers to and what it means to have autologous stem cells “manipulated”?
Autologous (ah-taw-la-gus) means from our own body. To manipulate is to culture the cells in a media of some sort that grows and expands their numbers. The reason for doing this is that to be clinically relevant, it is desirable that millions and millions of stem cells be re-implanted in us. Since we will not produce that amount in an extraction of our own stem cells, it is necessary to grow more cells. This is in no way dangerous or unsafe. It is, in fact, what makes the treatment much more likely to be successful. The FDA says since the laboratory is “manipulating” the cells, that this turns them into prescription drugs. This is utter nonsense and everyone knows it, but it is politics and big money and that is what we are fighting.
The only stem cell treatment that is legal (other than in a FDA approved clinical trial for which there are none for COPD at present) is autologous treatment with no manipulation.
How long did it take for you to see any results?
The first time I got treatment, as I mentioned I got very ill afterwards. When I did get to feeling better, I found I could breathe much easier and do a lot more than I had been able to do before. I now know that this was due to growth factors which eventually wear off. If only I had known then what I know now! Most doctors caution that it can be 30-60-90 days before any results will be felt. It really depends on the mix of the treatment and the type of stem cells that you get, too.
Will you need further treatment to sustain the benefits of stem cell therapy?
Stem cell therapy is in its infancy. The autologous treatments I had in the U.S. were not clinically relevant enough to regenerate lung tissue, but I believe they have done me a world of good. I have a much better outlook on life. I feel good. I feel energized like you would not believe. I am no longer getting sick like I was. I only use Advair and Spiriva prescription inhalers now, but I do use supplements, including a product called Stem Cell Advance which releases stem cells from my own body into my system. I also find things such as curcumin and Vitamin D to be helpful. There is so much going on now and most stem cell doctors do believe that certain supplements and diet can be beneficial in reducing our inflammation which is a big part of the problem with COPD. I feel confident that regeneration is possible and will continue getting stem cell treatment until I achieve that goal.
What do you think the future holds for COPD patients and stem cell treatment?
I think the future is very promising. I believe that stem cell therapy, coupled with supplementation and possibly a few promising things such as HGF and even gene therapy may play key roles. We may see the use of different types of stem cell therapies such as adipose (fat) derived, placental derived, marrow, peripheral blood, umbilical cord or combinations of such used to treat patients. iPS stem cells may be able to act just like embryonic stem cells. Some say they are the fountain of youth. Also, one of my doctors has me eating a lot of broccoli and dark cherries. There really is something to that everyone.
Do you think President Obama’s health care reform ideas will have any bearing on stem cell research and treatment?
Unfortunately, health care reform doesn’t even touch on stem cell research or treatments. If stem cell treatment could reverse disease in the millions of people that suffer from terminal and chronic conditions, billions and billions of dollars could be saved in health care costs. President Obama lifted the federal funding restrictions for embryonic stem cell research. He has not intervened with the FDA’s declaration of our own stem cells being drugs. I believe he needs to do this as adult stem cell therapy already has thousands of science based treatments under its belt, thousands of peer reviewed published articles available and so it is much more “ready to go” than controversial embryonic stem cell research. The U.S. is also losing out economically as more and more people seek treatment outside the U.S. because nothing is available here for them. There are currently NO clinical trials for COPD using stem cells in the U.S. There was one trial done by a private company, Osiris, but unfortunately, it does not look promising. Their trial used all mesenchymal stem cells, which according to researchers that I know, cannot regenerate lung tissue sufficiently enough to improve lung function without using other types of stem cells as well. I believe that the current health care reform bills will hinder, not foster better care for us.
What would you tell other COPD patients who are interested in stem cell therapy?
I would tell them that stem cell therapy has changed my life. However, I implore people not to just run out and spend all of their money on stem cell therapy without taking a lot of time to research and learn about what is happening in the industry. I see so many people reading testimonials from websites and then wanting to rush and get treatment. There is too much at stake to not research as many companies as one can and then deciding what is best for you. Some people do not seem to notice any improvement after treatment, but then they discover that they are feeling better or that they may not be declining as rapidly as they were and this to me is success, although not the regeneration that we all are seeking. I work closely with many researchers and doctors and it is amazing what they are coming up with. I would never have been able to be doing what I am doing without having made that first step. I hope to make a difference to my fellow sufferers for the pioneering I do and I know that others who are doing the same feel that way too. My friend who went with me for our first therapy and I remain the best of friends, forum co-founders and now business partners, which is yet another reason I think I made the right choice.
Barbara Hanson continues to be a strong advocate for the advancement of stem cell research and treatment in the United States. On behalf of About.com and myself, I would like to thank her for this interview.
