STATEMENT OF IRENE S. POLLIN My name is Irene Pollin. I am speaking to this subcommittee today from three perspectives. I am President of the Linda Pollin Foundation, a non-profit charitable organization dedicated to improve the availability and accessibility of Medical Crisis Counseling SM services for chronically ill patients and their families. I am also a member of the Presidentially appointed National Cancer Advisory Board. Third, I am speaking as a mother of two children who were born with and died from severe heart defects, and whose family could have benefited from Medical Crisis Counseling SM services if they had been available. LINDA POLLIN FOUNDATION The Linda Pollin Foundation was established in 1987 as a non-profit, charitable foundation dedicated to improve the availability of Medical Crisis Counseling SM services to chronically medically ill patients and their families. Medical Crisis Counseling SM is short-term therapy that addresses many of the issues that patients and their families must face when coping with a long-term illness. These issues include not only the emotional and adjustment issues of coping with long-term illness, but also medical issues such as the need to comply with medical treatment plans. SM The Linda Pollin Foundation is grateful to this Committee for including report language in last year's appropriations bill requesting that the National Cancer Institute (NCI) assess the degree to which psychosocial services are provided to patients and their families in cancer centers. This report was submitted to Congress earlier this year. The good news is that the report reflects NCI's recognition of the need for and benefits of psychosocial counseling services. The bad news is that the report represents the "ideal" stateof-the-art care which may not be provided by the majority of federally funded cancer centers. For example, at one cancer center, only 0.2 percent of the annual budget is dedicated toward psychosocial services. We recognize that federal funds from the NCI support only research, and that counseling services are paid for primarily by patients' private insurance, Medicare, Medicaid and private funds. However, the Linda Pollin Foundation is advocating for the inclusion of mental and emotional well-being in outcomes and effectiveness research sponsored by the NCI. Today it is possible to measure the psychological, biological and oncological variables in patients with cancer with greater precision. A study reported in the Lancet in 1989 showed that, as in more that 20 other studies, quality of life was enhanced in patients who received counseling during their medical illness. Furthermore, the study by Spiegel and colleagues showed that survival was also prolonged in women with advanced breast cancer who were randomized to receive weekly group psychoeducational intervention. Possible impact on survival demands further exploration in a properly designed study. One of the ideal places to carry out such a trial is within the NCI-funded clinical trials groups or in a cancer collaborating center. SUMMARY The counseling needs of patients with cancer need greater attention to assure not only enhanced quality of life but optimal opportunity for survival. To achieve this goal, the Linda Pollin Foundation supports the funding level recommended in the By-Pass Budget submitted to the President by cancer experts. This level of funding is critically needed in order to ensure that our National Cancer Program remains strong. As a first step in meeting the funding level recommended in the By-Pass Budget, the Linda Pollin Foundation fully supports the recommendation of the National Coalition for Cancer Research: -An increase of $200 millions above the President's Budget Request to support critically important research needs in basic and clinical research, prevention and control research, and information dissemination. An appropriation of this amount will only return the purchasing power of the National Cancer Program to its 1980 level. Of this amount, up to $1 million would be directed towards: -A demonstration study to identify payment mechanisms for psychosocial services in cancer centers. There is consensus in the heath community that psychosocial services have a significant impact on the outcome of illness. However, without a mechanism for payment for the services, the services are not fully provided and utilized. A demonstration project of this type is a natural fol low-up to NCI's report to Congress and could lay groundwork for the provision of Medical Crisis Counseling SM services in all cancer centers. -Providing multidisciplinary training programs which incorporate psychosocial intervention. A variety of mental health professionals can provide psychosocial counseling services-nurses, social workers, psychologists, and psychiatrists. However, all of these professionals need training tailored to the needs of patients with chronic disease. Our Foundation has developed a model curriculum in Medical Crisis Counseling SM and is eager to work with NCI in-training health providers. Thank you for this opportunity to testify. I would be pleased to answer any questions. Senator INOUYE. Mrs. Pollin, is medical crisis counseling service presently available at cancer centers? Mrs. POLLIN. It is it is to some degree. But I can tell you, I work very closely with people who work in centers such as SloanKettering, who provide fantastic services, but could be so much better. And I would like to make some suggestions here, because I think once these things are being offered a number of things will happen. No. 1, the patient's quality of life will improve. Going through these clinical trials can be horrendous. I am sure everyone in this room knows that. No. 2, the compliance with the treatment will increase, and this would be during their treatment, while they are going through the clinical trial. It improves the success of the medical treatment. It also helps the doctors while they are working with the patients. There is also the possible extension of life. There are now studies that show, for example, women with breast cancer live twice as long when they have counseling. Then a surprise: I think what we might discover is a way to cut the runaway costs of health care. There are now a number of studies that show that people with counseling use less medical services, doctors, hospitals, families stay healthier, and patients go back to work and become productive citizens again, so that now, rather than taking from society, they can now give back, and is that not what we want them to do? Senator INOUYE. Senator Specter. Senator SPECTER. Thank you, Mr. Chairman. Mrs. Pollin, as your statement notes, the committee did include report language last year requesting the National Cancer Institute to assess, as you put it, the degree to which psychological services are provided to patients and their families in cancer centers, and we have those reports and you have commented on them in your prepared statement. I agree with you that counseling is very important and that if you have people who understand what their problems are they can make mental adjustments and begin to cope. It has a very direct impact, not only on their mental status but on their physical status as well. You have asked for a substantial addition, and we appreciate your position. To allocate a part of it for this line is I think a very good idea, and I can assure you that we will give very careful attention to the request which you have made. We have one of the very toughest subcommittees of all in Labor, Health, and Human Services, and Education on the allocation of resources. We have almost as much money as Senator Inouye's principal committee, the Department of Defense, does, but we have a great many more issues which we have to confront. But we do appreciate the interest you have taken, the contributions which you have made, and for you bringing Abe to the hearing as well. Thank you. Mrs. POLLIN. Thank you. Senator INOUYE. Mrs. Pollin, I am not certain whether I heard correctly. Did you say that with this counseling service, social services, you can double the life expectancy of women who have had breast cancer? Mrs. POLLIN. There was a recent study by Dr. Spiegel from Stanford in the last 8 months, that came out in JAMA, and he reported-I think this was a long-term study of women who had counseling and women who did not have counseling, and the women who did have lived twice as long as the women who did not. That is a very interesting study. Senator INOUYE. All you are asking for is $1 million, is it not? Mrs. POLLIN. Oh, yes. But I think the returns will be incredible. Senator INOUYE. We will take it out of the Philadelphia Naval Ship Yard. [Laughter.] Senator SPECTER. Irene, that is the best news I have had all day, because as long as there is a Philadelphia Naval Ship Yard to take it out of we are delighted. [Laughter.] Senator INOUYE. That is why I said that. Senator SPECTER. I can tell you that Senator Inouye has been a very, very staunch ally of the Philadelphia Naval Ship Yard. Senator INOUYE. So you do not mind giving up $1 million? Senator SPECTER. Senator Inouye, that depends upon what figure we start with. But I am sure we can work it out. Senator INOUYE. Thank you very much. Mr. POLLIN. Thank you very much, Senator. STATEMENT OF ABE POLLIN Senator INOUYE. Do you want to say anything, Abe? Mr. POLLIN. Well, yes; I would just like to add one thing, and that is my wife got into this, this business of medical crisis counseling, from personal experience, and I think that she has done a fantastic job. We had our own tragedies in our family, in which we were looking for and striving for help, and there was no help, many years ago. So what she has done is found that there is a way to help people who are faced with chronic illness, help the patients and help the families. And I strongly urge that this $1 million certainly would be well-spent for this program, because from a personal standpoint we know how important it is. Thank you very much. Senator INOUYE. Thank you. STATEMENT OF SIDNEY COHEN, M.D., CHAIRMAN, DEPARTMENT OF MEDICINE, TEMPLE UNIVERSITY SCHOOL OF MEDICINE, PHILADELPHIA, PA, AND PRESIDENT, AMERICAN GASTRO ENTEROLOGICAL ASSOCIATION Senator INOUYE. Our next witness is Dr. Sidney Cohen of the American Gastroenterological Association. May I recognize Senator Specter. Senator SPECTER. Thank you very much, Mr. Chairman. It is a pleasure for me to give a formal introduction to Dr. Cohen, who is a very distinguished physician, chairman of the Department of Medicine at Temple University School of Medicine. And he is here testifying today on behalf of the American Gastroenterological Association. His testimony will be related to funding for the National Institutes of Health in general and specifically the National Institute of Diabetes, Digestive, and Kidney Diseases. He comes from a very distinguished university which has a fine medical center, and he is a preeminent person at that institution, from Philadelphia, PA. Dr. COHEN. Mr. Chairman, my name is Sidney Cohen and I am chairman of the Department of Medicine at Temple University School of Medicine in Philadelphia. It is my pleasure to be here today to testify on behalf of the American Gastroenterological Association, the AĞA, of which I now am president. I would like to address the issue of fiscal year 1992 funding for the National Institutes of Health, particularly the National Institute of Diabetes, Digestive, and Kidney Diseases, the NIDDK. Gastrointestinal diseases are very prevalent in our country. Disorders range from the annoying but debilitating problems of irritable bowel syndrome to the life-threatening complications of hepatitis and gastrointestinal cancer. The inflammatory bowel diseases have left many of our young Americans without major portions of their intestinal tract and with the lifetime requirement for an ostomy. These disorders are widespread, entail considerable human suffering, and often cost a great deal of money. According to the National Digestive Disease Advisory Board, the medical costs alone of digestive disease are estimated at about $17 billion per year, with the total cost, including lost productivity and wages, approaching a staggering $50 billion. Building on knowledge gained from years of investment in basic research, NIH-funded clinical studies of digestive diseases have yielded tremendous strides in our ability to treat or cure these ailments. Earlier this year, researchers identified a gene that is linked to an early stage of colon cancer which is now diagnosed in 140,000 Americans per year and results in 60,000 deaths annually. Due to improvements in surgical techniques and the introduction of a powerful antirejection drug, the 1-year survival rate for liver transplantation patients has increased from 30 percent in 1980 to approximately 70 percent today. Some 1 out of 10 Americans has a peptic ulcer. The development of new drugs in the 1970's to treat peptic ulcer disease led to a 43percent drop in the number of hospitalizations for this condition between 1970 and 1980. Gallstones affect approximately 20 million Americans and nearly 1 million cases develop each year. Recently a nonsurgical treatment for this disorder was developed. Also, less risky alternatives to surgery are now available in the United States. For fiscal year 1992, the AGA supports the ad hoc group for medical research funding in recommending an NIH budget of $9.77 billion. Specifically for the NIDDK, we recommend a fiscal year 1992 budget of $763 million, a 23-percent increase over this year's funding. This would allow support for 30 percent of approved research project grants, a modest increase over this year's 27 percent rate. It would also support 55 research centers, 200 career development awards, and 1,000 research trainees. Funding at this level will enable the NIDDK to support research in several areas that we believe are in need of special attention in 1992: hepatitis, liver transplantation, inflammatory bowel disease, and peptic ulcer. The basic research and clinical studies in digestive diseases have led to many important accomplishments in the past several years and many current efforts hold tremendous promise for uncovering cures and treatment for some particularly incapacitating diseases which are often life-threatening. PREPARED STATEMENT We realize that this is a time of very difficult choices for Congress because of the severe funding constraints it must work within. However, the AGA believes that health research is one area where the investment of funds can yield enormous dividends in both human and economic terms. Thank you for considering the views of the American Gastroenterological Association. Thank you. [The statement follows:] STATEMENT OF DR. SIDNEY COHEN My name is Sidney Cohen, and I am chairman of the Department of Medicine at Temple University School of Medicine in Philadelphia. It is my pleasure to be here today to testify on behalf of the American Gastroenterological Association (AGA), of which I am president. I would like to address the issue of fiscal year 1992 funding for the National Institutes of Health (NIH), particularly the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The American Gastroenterological Association is an organization of 6,300 physicians specializing in the treatment of digestive diseases. Its members are dedicated to fostering progress in patient care, research, teaching and continuing education in the field of gastroenterology. The programs of the NIH, in particular NIDDK, are of special importance to AĞA members, many of whom apply for support for their research from this agency. Gastrointestinal diseases are very prevalent in our country. Disorders range from the annoying but debilitating problems of irritable bowel syndrome to the lifethreatening complications of hepatitis and gastrointestinal cancer. Inflammatory bowel diseases have left many of our young Americans without major portions of their intestinal tract and with the lifetime requirement of an ostomy. These disorders are wide-spread, entail considerable human suffering and often cost a great deal of money. According to the National Digestive Diseases Advisory Board, the medical costs alone of digestive diseases are estimated at about $17 billion per year, with the total cost-including lost productivity and wages-approaching a staggering $50 billion. Almost half of all Americans will suffer a digestive disease at some time, and 20 million people will undergo treatment for a chronic digestive disease each year. Digestive diseases of this kind include hepatitis, other liver diseases that can be lifethreatening and require liver transplantation, gallbladder diseases, inflammatory |