Events

February 28, 2003 Helen Moss Breast Cancer Research Foundation Board meeting at 8:30 a.m. Union Club

Board Members present: Helen Moss, Carol Adrine, Barbara Ruhlman, John Moss, Jim Moss. Absent: Selden Martin, Dr. Lucas, Dr. Berger, Dr. Weiss, Dr. Utian, John Inhouse, Fran Goldman

Guests present: Dr. Peter Whitehouse, Director of Integrated Medicine, CWRU; Tim Resor,Paralegal with Ziegler, Metzger & Miller, Law Firm Representative and the database adminiastrator; Richard Fleischman

Helen Moss began the meeting by introducing guests, board members, and thanked Tim Resor for all his work on the creation of the Database.

Helen Moss’s Report:

Financial Report: $81,000 in our account. We have collected close to $100,000 in the past 2-½ years. We are going to get a donation of $5000 from Richard Garrett and $10,000 from Merrill Lynch. We made about $20,000 from our Annual Tea Party in Nov. 2002 and received many positive comments regarding our format and our speaker, Dr. Susan Bauer-Wu of Dana Farber. Merrill Lynch will no longer pay our legal fees of about $1,000 a year, but I attribute this to the current economic climate for the financial industry. They paid for about $5,000 of the expenses of the annual tea.

The cost of the trip to India was about $12,000. The justification of this expense is that the trip to India and all that was learned, gained, and the connections made are invaluable to the leadership and direction of this foundation and to the community. There is no way in this country that we would have been able to get this world overview of holistic medicine with the quality of the presenters. It was a unique experience and an experience that can be helpful and beneficial to the community. Richard Fleischman and Helen Moss expect to donate $10,000 this year. According to our legal documents, Mrs. Moss can only give up to 33% of what is donated per year. We have spent in the last 2 years about $4,000 on matching scholarships to the Comprehensive Cancer Care Conference in Washington, D.C.

Dr. Susan Bauer-Wu, who was our speaker at the third annual Foundation Tea in November of 2002, stated that we have a Foundation here that is far more powerful than we can realize. We have excellent people, which is very important to this Foundation, and the timing is right for the focus on integrative medicine. We have direction as well. In the summer of 2000 when I first founded the Foundation, I did not know what direction I was going in. I had assumed, as many people do in our country, that there is a 95% cure for cancer, and that if we do what the doctors tell us because billions of dollars go into research, we have little to worry about death. I never heard of the pain and suffering of chemotherapy except that the doctors said to me, “it used to be that way.” Not true.

Disappointments in recent research = Gleevac

Recently there have been tremendous disappointments in research. For example, the antigeogenesis drug Gleevac has attacked the cancer tumor, but the patients have died from organ failure. In the meantime, what I have learned from patients around the world is that just attacking the cancer is not enough. What we have to do is look at preventing cancer using both Eastern Medicine and Western Medicine.

Jim Moss then asked for a definition of the terms.

Helen Moss said that generally, Alternative Medicine is derived from Eastern Medicine, although Native American medicine falls into this category. Western Medicine is science-based medicine that attacks the disease. The body is much like an automobile; we will treat the disease. Eastern Medicine looks to strengthening the body through mind, body, spirit; it recognizes energy, spirit, whatever in the healing process and treats the individual patient in a humanistic fashion, as an individual. Each body is different and how we get that body to assist in ridding itself of the disease and then preventing its return is where alternative can be integrated into allopathic medicine. I don’t think there is a problem with Western Medicine and all the wonderful things it has done throughout the world with drugs and with surgery, but because of the doctor’s spending only 3-5 minutes with the patient, there has been a backlash and 60-70% of the people are going to Alternative Medicine with diets, supplements, and the personal attention of the practitioner. It has been said that some of it is quackery; however I will say that in Western Medicine, some of it, too, is quackery. When allopathic doctors say “Take this chemo just in case,” where is the science-based study that says that chemo is going to help you? There is no scientific proof in many instances any more than much of Eastern Medicine has scientific proof. Western Medicine has to take responsibility for perpetuating HRT on the public. We might say that there has been a little bit of quackery involved since it was perpetuated as the veritable “fountain of youth” for women. I don’t like to use the word because it makes people angry and polarizes them. But we have to recognize that neither Eastern nor Western medicine has all the answers, and we have to remember that until recently the layman thought otherwise regarding Western medicine.

At one time, I would have said that it would be Western Medicine that would integrate with Eastern Medicine, but when I went to India, the point of view is reversed. In India, they say they are the “mainstream.” However, as you integrate you don’t want to lose the Eastern point of view which is individualistic and humanistic as opposed to the human body treated as a repairable automobile. Or for that matter, if the automobile is wrecked and beyond repair, the doctor says, “Go home. I can’t help you or “Let’s try some chemo.” Eastern medicine works with mind, body, and spirit and does not give up on the patient, but tries to work with the patient as long as possible to maintain the quality of life even if there is no cure for the patient.

The importance of the aspect is that the patient is to be a partner with the doctor. It is to empower the patient. Integrated Medicine is empowering the patient as much as anything else.

“Peter, what is “CAM?”

Peter Whitehouse: I think CAM (Complimentary Alternative Medicine) is an attempt, in one word, to incorporate the two words that people have struggled with: complimentary and alternative medicine. Complementary is problematic because it always makes reference to Western Medicine. It could be complementary to each other. Alternative also has the sense of “one or the other,” so I think Integrated Medicine is replacing “CAM.” The West/East distinction also is problematic because there are indigenous healing traditions in practically every country: countries in the West as well as in the East. No one of these dichotomies work quite well, which I think is why people are gravitating towards “Integrated.”

Jim: Can you talk a little about mind, body, and spirit?

Peter: I think there is a sense in Western Scientific Medicine that they focus more on the body. In every tradition, be it oncology or whatever, they teach traditionally about the importance of the mental life and its affect on health, although one could argue even that amount of teaching is not adequate because it under-values the power of the mind over the body. This is not to say that there aren’t major movements in Medicine to incorporate spirituality and religion into Western Medicine but as a general rule the further you get away from the body, the less likely you treat it with respect and it is undervalued in terms of its influence on people’s health. The fact that we can separate mind, body, spirit in Western Medicine by putting them into three categories is problematic for those in Eastern traditions that integrate them and don’t see the distinction the way we do.

Mind, Body, Spirit

Marian Good, is a nurse who runs the Mind, Body Program in the Nursing School at CWRU certainly includes spirit in her work. For some people, spirit is included in “mind.” For other people, they feel the need to mention spirit separately because some people might think if you say “Mind, Body” you can be a psychiatrist and not attend to the spirit. I think to say “Mind, Body, Spirit” makes sure that you encompass the broader scope that the doctors can influence.

Helen: I think when you say “Mind, Body, Spirit”, it is a problem for some who are not Christian, Jewish, or whatever; they may be agnostics or atheists. I always avoided yoga because I thought I had to be spiritual or attuned to an Eastern religion and that is not the way I feel. So when I actually did the yoga I couldn’t believe it is something other than what I thought. It is very strenuous physically and very relaxing mentally, so it just wasn’t “mind.” It was definitely body. Yoga is Mind, Body, and Spirit, the Spirit being my essence or my “being.” I was the center of the Yoga or my “spirit.” I can accept that and, therefore, be open to yoga and its healing properties without accepting any established religion or religious ideology.

Comprehensive Cancer Care Conference 2003

A year and a half ago I attended the Comprehensive Cancer Care Conference 2003 and that was my first introduction to CAM. I am not saying that it is the best conference on this subject, but it is the most recognized in this country for Integrated Medicine. I bought and listened to every one of the tapes. It took me over a year. The first time you become acquainted with CAM, you can be overwhelmed because you have to open up and change your thinking. Richard went with me. Wouldn’t you say it was a shock, Richard, and that we learned a lot of things we never thought of before?

Richard: You could say that.

Helen: I don’t think I would have gleaned as much from India if I didn’t attend this Conference. I gave a talk to the 1,400 attendees at one of the plenary sessions, and it was the only time where the Conference was emotional. We had five cancer survivors speak. One of them has since died. One of the doctors who spoke said he became a doctor when his wife died. Even now it brings tears to my eyes. He said he was trained in Western Medicine and that was his Bible and he said he learned as much about medicine from his wife, and what she went through, as he did from all those years of study. He said that he learned to be a good doctor when she was lying on the floor in pain and he lay down next to her and cried with her. Many people came up to me afterwards and they said, “You gave me the reason why I am a doctor.” In my paper on India, you will see that I compared the two Conferences, and I am very interested in going once again in April 2003 and doing a paper on this one the same way I did the Indian Conference....To compare the two conferences with the new understanding I gained in India.

Motion to grant scholarships to Conference in Washington

The Conference in Washington is fighting an up-hill battle. Every mainstream cancer center in the United States was represented at that Conference 1 ½ years ago. I think Joan Fox of the Cleveland Clinic was there as were two medical professionals from University Hospitals. That means that every mainstream medical center in the United States is looking at this seriously. But, according to Dr. Susan Bauer-Wu, no cancer center has succeeded in offering yet true “integration.” However, they are trying. The New Life Health Center in Boston where I spent a week was run by a Chinese Healer. My regimen was daily acupuncture, acupressure, Yoga, counseling, and a very controlled and strict diet with an offering of at least 16 fresh vegetables a day. I spent one week there and watched him work closely on people with terminal cancer. He has had this clinic for over 15 years and I heard of him and his program from a man who had had liver cancer and highly recommended him.

Times are changing. This year I would like the Board members offered scholarships to the Conference in Washington as it is very important to learn as much as possible about integrative medicine. Richard and I are going as well as Carol Adrine. I need a motion on this subject. Barbara Ruhlman: I so move. Seconded: Jim Moss, Motion passed. I am also recommending that we pay for one of two people, either Kathleen McCue or Cece Cornell from the Gathering Place who want to attend. It will cost $1,600 for one with the other one paid for by The Gathering Place. Barbara Ruhlman: I so move; Carol Adrine seconded. Motion carried. Richard Fleischman is paying his own way and I will be paying part of my way as well.

I have talked to Dr. Jane Hart of the WMCA and Preventative Medicine Consultations (PO Box 18332 Cleveland Heights, OH 44118), who wants to attend the Conference as well. She will get back with me to see if the Director will pay half of the fee. I think that it is important for this well-respected organization to attend. They have a skeleton program promoting Mind/Body/Spirit.

The Gathering Place

As you know, the Gathering Place seems to be accepted by the mainstream hospitals and they do a good job. In talking to the director Eileen Saffron, they work with Mind, Spirit, and Body Medicine. They do much counseling and give out some information on integrative medicine, especially diet. However, they don’t promote integrative medicine. They must be careful and cannot be the least bit controversial. They get their funding from Cleveland Clinic and University Hospitals. Our particular Foundation can be outspoken and a little controversial. We can be a leader; we can bring organizations, speakers and the community together. The Gathering Place has a staff and a building to maintain. I want to keep our controversy to a minimum, but we do not rely on major institutions for funding. Our 500 members are giving us the money and our 500 members say, “We know what you want to do so go out and do it and if you need more money, come back to us.”

Carol Adrine: The Gathering Place is a place that does both education and provides treatment and counseling. People who have cancer go there and they talk about their experiences. Family members and cancer patients share their experiences. One family member that I was close to had an 11-year-old son with a rare form of cancer and they were very good with his three siblings. They are located in Beachwood and you can call, you don’t need a referral.

Richard: How is this different from palliative care? Why don’t I talk to Dr. Walsh at Cleveland Clinic, head of Palliative Care.

Helen: When you talk about breast cancer and certain types of cancer, the cancer victims can live for a number of years. You can live for 3 years or even longer and even be cured. Palliative care usually means weeks or a few months left of life. The Gathering Place, which is an outpatient facility, counsels during and after treatment for both the families and the cancer patient. You can take courses there; it is a learning experience to help yourself take control. I would not equate the Gathering Place and Palliative Care which includes being admitted to an institution.

Helen: I didn’t have an opportunity to approach the Cleveland Clinic or University Hospitals regarding offering them scholarships to the Comprehensive Cancer Conference. .

Three Projects to be undertaken

1. Investigation of integrative cancer centers – It is important that our Board members be knowledgeable

Helen: Dana Farber and M.D. Anderson will be presenting their integrative cancer care programs at the Comprehensive Cancer Care Conference in April and Carol Adrine and I will report back to this Board. I dropped in on the Memorial Sloan-Kettering Integrative Cancer Center at 303 E. 65th St., New York. I will contact her before the Washington Conference. I also have brochures on their program.

Dr. Berger mentioned that we should visit the Dana Farber one in Boston. Susan Bauer-Wu said that if we do that, we should also visit the New World Health Center of Master Bo-in Lee. I agree that we should see both as Master Li gets many referrals from allopathic doctors. Dana Farber and M.D. Anderson will be presenting at the Washington Conference. I have a friend who is dying of brain cancer who has been to M.D. Anderson many times in the last two years. His wife told me that they are desperate because the chemo only temporarily reduced the tumor. She said that the M.D. Anderson alternative medicine program did not impress her. She is looking world-wide for an alternative cancer-care clinic as their last hope. There is nothing like having patients to tell you the truth from their prospective.

Dr. Joan Fox of the Cleveland Clinic says that she has reports on seven fairly successful integrative cancer centers. I am in possession of those reports. We should ask her to our Board meeting of give us information.

There is a very successful integrative clinic in Northeaster Pennsylvania which has received a $250,000 from the NIH to educate interested people in a prototype. It is an outpatient clinic. We met the business man in India where he made a presentation. It is called “Inner Harmony.” We should visit this institution as well.

Another Tea Party Sunday, April 27

Helen: I have received many questions regarding my trip to India, to Boston, and I want your opinion on whether to have another Tea Party on Sunday April 27 to present some speakers, Dr. Joan Fox, perhaps Dr. Whitehouse, and myself and Carol Adrine. I would speak on the Indian trip and Carol and I together can speak on the April Conference which would be the previous week. We will send out postcards to our members. In the meantime, Maxeen Stone Flower has contacted me for her granddaughter, Miriam Stone, whose mother died of breast cancer when she was starting college. Ms. Stone, a writing major in her senior year at Columbia University, has just had a book published titled “At the End of Words, a daughter’s memoir” on how this disease affected her entire family’s life. It is a very poignant message, and I think that it would be a part of our mission to have this young, talented woman speak at our Tea and present her book for signing.

Board: General consensus – Good idea. Comment: Foundation members as well as the Board should be educated as to what we are learning and doing, and those who have donated would be inclined to be more supportive if they know about it

Sponsoring Deepak Chopra as a speaker

Much Board discussion.

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Peter: Helen, I think we should pursue the idea of CWRU Medical School and the doctors at least at the medical school and the medical profession and if he does come in, that we at least make an attempt to say “Would you have him talk to your medical students?”

Helen: I understand that he speaks twice a year at Harvard Medical School. I guess if it is good for Harvard Medical School it is OK? What do you think Peter?

Peter: Deepak does provoke strong feelings among traditional people and as you yourself described in your report on the Indian Conference, at least in the first draft, he is a man who obviously has made a lot of money by being spiritual. When he does it with such panache some people get a little suspicious. Kim, who knows him quite well, and I talked a little about this and we talked after the Conference… Kim is aware of his reputation and Kim actually sat down with Deepak and said “What are you in this for?” Kim left convinced that Deepak actually was in a different place in his own development. He is controversial and I think that is good. I think we can play to that and I think we can discuss some of these things openly because there is a great deal of suspicion on the part of the mainstream of people who are successful outside of the mainstream and Deepak surely has that.

Problems between mainstream institutions agreeing to explore and promote integration

Helen: Dr. Berger has expressed this concern as well. To digress for a moment, Dr. Joan Fox at Cleveland Clinic appears to be a one-woman show. She’s done all the work. In your packet you will see all the programs she is doing. She says she is getting tremendous interest but there is one major drawback: “Whom do you refer your patients to?" She said Cleveland Clinic says they believe that this program should go forward, and the doctors say they think it is great, but where do they send the patients? That is what I am hearing everywhere. The YMCA has similar problems I believe. We think the rallying point is Chopra getting everybody together so we can work together on this, but the problem then is the follow-through. Where are the health practitioners we can refer to? At the Gathering Place they only have counseling; they do not have acupuncture, acupressure. They don’t have the ability. If you start getting all these health practitioners referring, one doctor can’t handle it; 4 doctors can’t handle it.

Peter: One Organization that Joan Fox is on the Board is ___Mind, Brain, Spirit Connected. That is an organization that started a year or so ago that is steadily growing and has credibility as a place where all the practitioners in town are linked. The whole process of referral is complicated because if you refer to a nurse or a social worker or doctors you know they have a license; if you refer somebody, as you alluded to in the beginning of your talk who is in Integrative Medicine, consistent credentials are a problem. So if we get into this business of referral we need to be aware of this. On the other hand the Mind, Body, Spirit Connection that exists already has some kind of process if not accreditation but at least of evaluation.

Helen: I worry about the view that Western Medicine sees alternative medicine as competition rather as integration. I believe that they do not take alternative seriously, but may view it as a threat. As long as hospitalization will not pay for integrative medicine, it will not be a threat. The problem is for instance my hospitalization will not pay for an acupuncturist who is not an MD. I would much rather go to Master Bo-In-Li who has been an acupuncturist trained in China for 35 years than I would an MD who got a degree 5 years ago from whoever or whatever. Dr. Brzinsky is going to be at the Conference. He is from Texas and started a treatment cancer center. He usually got the cancer patients who were terminal and in last stages, a few were cured and NIH recognized that as best-case series, but there is no science based evidence as yet. The doctors in Texas tried to shut him down but the people of Texas wouldn’t let them. He is now going to be speaking once again at the Conference in Washington. Hyperthermia, which is heating the body, is another form of alternative medicine. I listened to the tapes from a year and a half ago. If they could get people in early stages of cancer even before it becomes cancer, they feel they could be far more effective because Hyperthermia, when you have full-blown cancer, doesn’t do very much. You have to work with chemo and other kinds of things as well. In preventative medicine you can, if you find that you have genes that you are more likely to get cancer, you can change your life style and try to prevent it from coming. Mainstream medicine can’t attack it because it is not there yet.

Peter: You said two important things there. First, you said you couldn’t get acupuncture unless it was given by a physician. With Joan she is a one person show and I don’t mean to be critical of the Cleveland Clinic Foundation, as I am part of the University and we all work together. Secondly what happens in the integration process is that mainstream medicine has resisted it. Until there is either science-based evidence which is unusual or it is money or someway to attract people, then they will in fact do a 180-degree turn and will support it and then try to restrict the practice to their circumstances. That goes for both individuals and organizations. The University Hospital doesn’t have an Integrated Health program, but they have explored it. There are some practitioners there, but in both our main health systems in town one wonders whether they are doing it because they have to or because they are big enough, or they have to have something that is called Integrated Health. Are they really serious about integrating when they appoint only one person who cannot refer anybody? Ralph Schneiderman is the Chancellor of Duke University. Duke made a commitment to doing Integrated Health at the medical school comprehensively. That is very interesting for Schneiderman because he left Duke for a while and came back to Duke as the Chancellor. So here is a guy who has seen both sides if you want to polarize it that way. When a chancellor of a Health Care System says we are going to do this in an Integrated Way, you still have to watch because it still may be a little bit unacceptable. At Duke, he is visionary enough to see the importance of things but doesn’t actually do it. But I think this issue of who calls himself integrative and whether they really are integrative is really critical. If the community makes a commitment to Integrative Health that would bring all the organizations along that takes it more seriously.

Helen: The Dean wants me to go and maybe a few board members to look at some integrative places, which Susan Susan-Bauer Wu says are not sufficient. Now Joan Fox said there are 7 in her book. There is a program in northeastern Pa. called Inner Wellness Center. I have the literature on it. That man who developed it, a businessman, was given a $250,000 grant by the government to develop the clinic. He told us that originally he has tried to work with the mainstream medical profession to get referrals from the hospitals and they tried to shut him down hard. However, the public came in without the referrals and it is very successful and other places in the United States are coming to see him and see how he does it. The government has legitimized this man with their grant. We should visit this place. I have a letter from him; we met him in India and he said he would like us to come and see what we are doing here.

Carol, you said that Otis Moss had something?

Carol: He has a Clinic in the inner-city.

Helen: The most important aspect of integrative medicine is that the public is demanding integration and will expect it. Now, when I went to see my oncologist she did say she was doing some studies in integrative medicine. I have seen a difference in her the last two years.

Peter: Nate is at CWRU. You mentioned University Hospitals and of course I am not denying my relationship with it but it is important because CWRU is following up on this. Scott Frank who heads the Public Health Program at the University is working with Ed Hundert and Dick Vasnik to follow-up on the Health Arenas. Because CWRU is now affiliated with the Clinic, UH and Metro, if we do this under the University Umbrella, I think there is a new opportunity to avoid some of the frictions that have dominated and have been disruptive to our health care system between the Clinic and UH. So it is quite possible that Integrated Health could be something that brings a more positive sense of health rather than this unhealthy competition and that is why Nate, who runs the new Center for Science Health and Society, to which he was appointed to after he stepped down as Dean at the University. In addition to improving Public Health measures, he has been working on vaccination rates, teenage pregnancy and lead poison. He doesn’t immediately jump to Eastern approaches. He also has the responsibility for developing the building and program at the old Mt. Sinai Campus that would be a good location for some kind of Preventative Health Integrated Clinic.

Helen: Meeting Adjourned