Statements on National HIV Nutrition Guidelines
IDN DPG Members
- Deane Edelman, MBA, DTR, and Katie Mackrell, RD
- Ellyn Silverman, RD, MPH, CHES
- Linda Heller, MS, RD, CSP
Deane Edelman, MBA, DTR, and Katie Mackrell, RD
Statement on the Importance of Nutrition Support Services
The Ryan White Planning Council, Washington, DC
Good evening and thank you for this opportunity to address you tonight. My name is Deane Edelman. I am a Dietetic Technician, Registered, and I'm presently serving as Co-Chair for Public Policy of the American Dietetic Association's Dietetic Practice Group for HIV/AIDS. I also work part-time at Whitman-Walker Clinic and I am a member of the DC Nutrition Alliance, a group of Title I registered dietitians (RDs), dietetic technicians (DTRs), and nutritionists in the DC metropolitan area. This is Katie Mackrell of the Carl Vogel Center and the chairperson of the Alliance, who wrote to you on June 20 to stress the importance of increasing funds for nutritional counseling and support services in DC during the process of priority setting and resource allocation for Ryan White Grant Year 11. Her letter described three essential pieces of appropriate nutrition care that could be met by additional funding:
- Bioelectrical impedance analysis (BIA) testing;
- Distribution of multivitamins and liquid nutritional supplements, and
- Availability of water filters.
Tonight I would like to address a more general, but absolutely fundamental, issue; that is, access to basic nutrition care. We have taken an informal survey of DC Nutrition Alliance members and have verified what we already knew: Too few clients are receiving medical nutrition therapy. There is a range of reasons for this unfortunate situation. Here are a few:
- Too few RDs, DTRs, and nutritionist positions funded at Ryan White facilities.
- Too few funded nutrition hours .
- Too few referrals of clients by medical or other personnel to the nutrition professionals.
- Too low a level of awareness of the importance of nutrition care, not only among clients, but among other members of the health care team (physicians, nurses, case managers, mental health and addiction counselors,) and among administrative and intake staff.
The American Dietetic Association has developed both a position paper and a set of protocols for Medical Nutrition Therapy (MNT) for HIV/AIDS. To quote:
"It is the position of the American Dietetic Association and Dietitians of Canada that efforts to optimize nutritional status, including Medical Nutrition Therapy and nutrition-related education, should be components of the total health care provided to people infected with HIV."
The MNT protocols are intended for use at ALL levels of HIV care, beginning immediately upon diagnosis when the client may still be asymptomatic, right on through to active disease progression with palliative care at the last stages of life. Medical Nutrition Therapy (MNT) involves the assessment of patient nutritional status followed by the application of the most appropriate modalities to manage the condition. Such intervention strategies can include diet modification and counseling as well as specialized nutrition therapies.
MNT may be provided in a clinical or community based setting by a Registered Dietitian, Dietetic Technician, or other qualified nutrition professional. MNT is a medically necessary service and needs to be treated and funded as such. Ideally, every HIV- infected adult, adolescent and child should receive MNT either at the same location as their medical care, with a RD on site during clinic hours, or at a facility to which the physician refers them. Likewise, every client who receives meals or groceries from a Ryan White funded program should have access to a RD. There should be enough RDs to treat every client and enough hours for the RD to co-ordinate with the client's physician.
Nutrition needs to be integrated into the medical management of HIV disease. In our informal survey we found only one Ryan White funded facility in DC where more than 50% of the adult clients are receiving nutrition care. Clients are not aware of nutrition services, nor of their importance, so they do not self-refer. Physicians and other personnel do not refer. Nutrition professionals do not have the hours to treat all the clients who attend their facility, nor do they have the hours to increase awareness and make their services better known.
The importance of nutrition care for those infected and at risk for HIV disease has been recognized at the federal level where there is an effort underway in the Department of Health and Human Services (DHHS) to develop national nutrition care guidelines for HIV/AIDS.
The County of Los Angeles, California has had nutrition care guidelines since 1997. You have been given a copy of the Los Angeles guidelines.
You might be interested to know of one other effort at the federal level to strengthen and enhance nutrition services in the Ryan White CARE Act. Earlier this year, the American Dietetic Association (ADA) put forth a legislative proposal to the U.S. Senate Committee on Health, Education, Labor and Pensions (the HELP Committee) which handled the Ryan White reauthorization. We recommended first that the language of the Ryan White bill recognize Medical Nutrition Therapy as primary care. Secondly, we proposed a re-definition of nutrition in its other role as a support service. The definition would include "food, meals, nutritional supplements, and nutrition counseling and education." Although the legislators have not accepted the proposal yet, we are now planning discussions with the regulators about it. We invite you to consider the idea behind such a combined definition as you set about your priority- setting.
The division of nutrition services into separate categories, such as food, supplements, counseling or education, creates barriers to client well-being. Providing groceries or delivering a meal is only half a service. Nutrition education and counseling need to accompany the food. To stay healthy, persons living with HIV/AIDS need to learn how to plan balanced meals, use healthy cooking methods, practice food safety measures, compose meals and meal schedules that optimize the effectiveness of their medications, and use appropriate foods to manage the gastrointestinal side effects of both drugs and opportunistic infections.
On the other side, counseling a client and assessing his or her nutritional status, nutrient deficiencies, weight or lean body mass loss, or gastrointestinal symptoms is also only half a service. The dietitian needs the ability to prescribe and provide the supplements necessary to help these conditions. For example, when clients cannot tolerate food due to taste changes, nausea or thrush, liquid nutritional supplements can help them maintain their weight and lean muscle mass. Supplements such as glutamine may assist in alleviating diarrhea, and in the special case of Viracept-induced diarrhea, calcium tablets have proven useful.
Food, counseling and supplements deserve equal status in your priority-setting, and there should be no competition among them for funding. They are all nutrition support services, and all are equally necessary in maintaining the health of HIV-infected individuals.
These remarks are intended to remind you of the importance of nutrition care. It may be "preaching to the choir" in this group. But the message needs to go farther than this group. It needs to be spread not only to clients, but also to physicians and administrators. These groups need to be educated and convinced of nutrition care's therapeutic benefits and cost effectiveness. They need to be educated to refer the clients to nutrition professionals. You can help spread this message by assigning nutrition a higher priority than it has had, by allocating more funding to it, and especially by taking note of the following points:
- Nutritional status is strongly predictive of survival and functional status during the course of HIV infection.[2,3,4]
- The number of HIV-infected individuals that are affected by wasting (loss of body weight) has not declined in the era of highly active antiretroviral therapy (HAART.) This remains a major problem for many patients with HIV since it is directly related to increased morbidity and mortality.
- Optimal nutrition status helps prevent malnutrition and opportunistic infections, thereby helping maintain immune status, improving quality of life, and possibly decreasing mortality.
- MNT helps optimize the effectiveness of medications, improves tolerance to them, and helps manage and alleviate their side effects, such as nausea, diarrhea, fatigue and elevated lipid levels.
- Early nutrition education and intervention can decrease or delay expensive hospitalizations, emergency room visits, and generally lower the cost of care. (A report from the Institute of Medicine at the National Academy of Science in December, 1999 documented this fact for heart disease, diabetes and renal failure; this spring, the Committee Report for the Senate HHS Appropriations bill directed the Centers for Disease Control and Prevention (CDC) to expand research on the impact of nutrition therapy in the prevention and management of cancer, HIV/AIDS and osteoporosis.)
- Nutrition education increases self-management skills for people living with HIV and/or their caregivers.
- Newly recognized complications of the "lipodystrophy syndrome" - abnormal body shape and body fat, high cholesterol and triglycerides, insulin resistance and diabetes - have put clients at risk for heart disease and further add to the complexity of managing HIV. These symptoms are nutritionally related and can be treated with MNT.
In closing, I'd like to suggest that you think about what DC and our EMA might look like with more nutrition funding. There could be more RDs and more hours not only to assess and follow-up clients according to the MNT protocols for HIV/AIDS, but also...
- To prepare and conduct nutrition education sessions for clients
- To develop and deliver in-service sessions to educate other members of the health care team on nutrition's importance
- To market nutrition care and its value to clients
- To do outcome studies which would prove the value of nutrition care
Thank you very much for your attention.
- Fenton, Marcy, MS, RD. Nutrition Watch: Medical nutrition therapy is vital, Positive Living, AIDS Project Los Angeles, November 1999.
- Kotler DP, Tierney R, Wang J, Pierson RN. Magnitude of body cell mass depletion and the timing of death from wasting in AIDS. Am J Clin Nutr 1989; 5:444-7.
- Palenicek J, Graham N, et al. Weight loss prior to clinical AIDS as a predictor of survival. J Acquir Immun Defic Syndr Hum Retrovirol 1995; 10:366-73.
- Suttman U, Ockenga, J, et al. Incidence and prognostic value of malnutrition and wasting in human immunodeficiency virus-infected outpatients. J Acquir Immun Defic Syndr Hum Retrovirol 1995; 8:239-46.
- Position of the American Dietetic Association and Dietitians of Canada: Nutrition intervention in the care of persons with human immunodeficiency virus infection,June 2000
- Medical Nutrition Therapy Protocol for HIV/AIDS - Adults
- Medical Nutrition Therapy Protocol for HIV/AIDS - Children/Adolescent
- Los Angeles County Commission on HIV Health Services: Guidelines for Implementing HIV/AIDS Medical Nutrition Therapy Protocols (These Guidelines were originally issued with the MNT Protocols and a 1994 version of the ADA Position Paper attached. The Position Paper been updated, as indicated above.)
- "Nutrition Watch: Medical Nutrition Therapy is Vital," Positive Living, by Marcy Fenton, M.S., R.D., November, 1999.
Ellyn Silverman, RD, MPH, CHES
Statement to the Presidential Advisory Council on HIV/AIDS
Department of Health and Human Services, Washington, DC
I am Ellyn Silverman, President of ECS Nutrition Services located in Long Beach, CA. I am here to speak to you today on the need for development of Public Health Service (PHS) guidelines[1,2] for prevention and management of nutritional and metabolic complications of HIV.
Honorable Chairperson and Council Members:
Thank you for the opportunity to address the Council. I am here to urge your support for the development of the PHS HIV/AIDS Nutrition specific guidelines. I wish to make sure that the Council is aware that:
- Nutritional status is strongly predictive of survival and functional status during the course of HIV infection.[3,4,5]
- Wasting (loss of body weight) remains a major problem for many patients with HIV.
- Two years after the first protease inhibitor approval by the U.S. Food and Drug Administration, HIV wasting remained the second most frequent AIDS indicator condition among adult AIDS cases reported to the CDC.
- In pediatric AIDS, HIV wasting syndrome in 1998 increased in relative frequency from the fifth to the second most frequent reported AIDS indicator condition.
- John Hopkins University researchers reported in 1999, that of the 16 AIDS indicator conditions compared between 1994 and 1998 for some 3,200 patients in their observational database, wasting was one of only three that did not appear to have declined in incidence.
- The HIV Outpatient Study (HOPS) reported in 1999, that in a database of 11,755 clinic visits, the frequency of wasting syndrome diagnosis was equal or greater to that of Pneumocystis carinii pneumonia (PCP).
- Newly recognized complications of the “lipodystrophy syndrome”-abnormal body shape and body fat, high cholesterol and triglycerides, insulin resistance and diabetes-further add to the difficulty of managing an already complex disease.[11,12,13]
Despite research developments that provide potentially effective therapies to prevent or reverse wasting, little or no guidance on their appropriate indications and use is available. Guidance is also necessary to manage HIV-related nutrition needs: optimizing nutrient uptake, optimizing drug absorption, managing side effects, minimizing food and water-borne illness, and helping to navigate through the confusing maze of virtually unregulated and often poorly researched dietary supplements.
Over the last several months, I have participated on a panel of non-government and government experts in a DHHS-wide effort, coordinated by the Office of National AIDS Policy to explore the need to develop formal guidance in the area of nutrition and HIV disease. A meeting was convened on November 15, 1999 and a number of recommendations concerning the need for guidelines to address nutritional and metabolic complications associated with HIV and its treatment were formulated. The panel is presently developing an evidence based needs assessment for Dr. Goosby and Dr. Shalala and will ask for DHHS support in creating HIV/AIDS nutrition guidelines.
The need for such guidelines is demonstrated in part by the dramatic impact of the PHS treatment guidelines. The latest version of the "Guidelines for the Use of Antiretrovial Agents" was downloaded from the ATIS web site nearly 50,000 times in February alone, demonstrating the keen and growing need for guidance in HIV care. There clearly exists a need to develop guidance for health care providers and patients. I am convinced that like their counterparts addressing antiretroviral treatment and opportunistic infection prevention, these nutrition guidelines will prove invaluable in managing HIV disease for persons with HIV, medical professionals, researchers, community based organizations, state and local health care systems, and other public agencies and groups.
I would like to also add, that in coordination with Nutrition Guidelines, Medical Nutrition Therapy needs to be included in the Ryan White Care Act as Primary Care under Medical Services. Medical Nutrition Therapy (MNT) also needs to be included for HIV patients under the Medicare Wellness Act of which it has been left out. I would also ask that a Registered Dietitian with HIV/AIDS expertise be appointed to this highly regarded Committee to help integrate nutrition intervention across all lines of HIV care and treatment.
In closing, I respectfully urge this Council to support the development of PHS HIV/AIDS Nutrition specific guidelines, and to incorporate them as an essential component of the existing compendium of guidelines addressing the management of HIV.
Thank you for your time and attention.
- Department of Health and Human Services and Henry J. Kaiser Family Foundation. Guidelines for the use of antiretroviral agents in HIV-infected adults and adolescents. MMWR Morb Mortal Wkly Rep 1995;44(RR-8).
- U.S. Public health Service and Infectious Diseases Society of America Prevention of Opportunistic Infections Working Group. USPHS/IDSA guidelines for the prevention of opportunistic infections in persons infected with human immunodeficiency virus: a summary. MMWR Morb Mortal Wkly Rep 1995;44(RR-8).
- Kotler DP, Tierney AR, Wang J, Pierson RN. Magnitude of body cell mass depletion and the timing of death from wasting in AIDS. Am J Clin Nutr 1989;50:444-7.
- Palenicek J, Graham N, et al. Weight loss prior to clinical AIDS as a predictor of survival. J Acquir Immun Defic Syndr Hum Retrovirol 1995;10:366-73.
- Suttman U, Ockenga J, et al. Incidence and prognostic value of malnutrition and wasting in human immunodeficiency virus-infected outpatients. J Acquir Immun Defic Synd Hum Retrovirol 1995;8:239-46.
- Silva M, Skolnik P, Gorbach SL, et al. The effect of protease inhibitors on weight and body composition in HIV- infected patients. AIDS 1998;12:1645-51.
- Centers for Disease Control and Prevention. HIV/AIDS Surveillance Report. 1997;9(No. 2):18.
- Lindegran ML, Steinberg S, Byers RH. Epidemiology of HIV/AIDS in children. Pediatr Clin N Amer 2000;47:1-20.
- Moore RD, Chaisson RE. Natural history of HIV infection in the era of combination antiretroviral therapy. AIDS 1999;9:349-57.
- Moorman AC, Holmberg SD, Marlowe Sl, et al. Changing conditions and treatments in a dynamic cohort of ambulatory HIV patients: The HIV outpatient study (HOPS). Ann Epidemiol 1999;9:349-57.
- Carr A, Samaras K, Thorisdottir A, et al. Diagnosis, prediction, and natural course of HIV-1 protease-inhibitor-associated lipodystrophy, hyperlipidemia, and diabetes mellitus: a cohort study. Lancet 1999;353:2093-9.
- Flynn TE, Bricker LA. Myocardial infarction in HIV-infected men receiving protease inhibitors. Ann Intern Med 1999;131(7):548.
- Varriable P, Mirzai-tehrane M, Sedighi A. Acute myocardial infarction associated with anabolic steroids in a young HIV-infected patient. Pharmacotherapy 1999;19:881-4.
Linda Heller, MS, RD, CSP (on behalf of Dietitians in AIDS Care)
Statement Made to the Open Forum on
HIV/AIDS among Women and Ethnic Minorities
Department of Health and Human Services, Los Angeles, California
I am Linda Heller, the Registered Dietitian at the Children's AIDS Center of Children's Hospital, Los Angeles. I am here to speak to you today on behalf of the Los Angeles Dietitians in AIDS Care.
Dietitians in AIDS Care is in agreement with the position of the American Dietetic Association and the Canadian Dietetic Association that nutrition intervention -- medical nutrition therapy -- and education should be components of the total health care provided to persons infected with the human immunodeficiency virus.
However, we are concerned that for the most part the nutrition standard of care in Los Angeles County is non-care. Access to food and nutrition services and support is poor and what is available is poorly coordinated. We believe that those responsible for providing medical care to HIV-infected children and adults must be held accountable for their nutritional health. Medical nutrition therapy directly contributes to the overall well being and the delay of disease progression in those infected with HIV. Medical nutrition therapy can save health care dollars. We have developed guidelines to assist in these efforts. This document, approved by the Los Angeles County Commission on HIV Health Services and currently under revision, is a helpful first step. We submit a copy to you for consideration as a national model. We are also including the recently published HIV/AIDS Medical Nutrition Therapy Protocols for both children and adults.[2,3] The Bureau of Primary Health Care's 1997 "Program and Application Guidance" for outpatient early intervention services clearly states that funded programs must provide nutrition services. However, except for one Los Angeles County grantee, nutrition services are practically non-existent. Further, adequate direction, oversight, and funding provided for nutrition services and care are lacking. We ask you to provide assistance in this critical and overlooked area, specifically to:
- Develop National HIV Nutrition Treatment Guidelines.
- Develop a strategy to assure the implementation of National HIV Nutrition Treatment Guidelines.
- Recognize that medical nutrition therapy for HIV-infected children and adults is a medical necessity and is a medical specialty.
- Allocate adequate funds for medical nutrition therapy for all HIV-infected children and adults.
- Report annually on cost-benefit of federal allocations for nutrition and food resources serving HIV-infected children and adults.
- Publish a resource directory which includes food and nutrition resources serving HIV-infected children and adults.
- Require nutrition in the programs developed and provided by AIDS Education and Training Centers; and, target registered dietitians with other medical professionals for training.
- Establish within the Department of Health and Human Services an Office of HIV Nutrition to coordinate and support HIV nutrition standards and guidelines, information, education, research, and services throughout the country.
- Establish that an expert in food and nutrition be part of local planning councils.
- Establish that an expert in food and nutrition provide oversight to allocated local, state and federal funding to assure food and nutrition HIV standards in the delivery of food and nutrition services.
- Assure access to adequate food resources for persons living with HIV disease.
For further clarification, please do not hesitate to call either myself or the Dietitians in AIDS Care coordinator, Marcy Fenton.
Thank you kindly for your time today and attention to this very important matter.
- Position of The American Dietetic Association and The Canadian Dietetic Association: Nutrition Intervention In The Care Of Persons With The Human Immunodeficiency Virus Infection. J Am Diet Assoc. 1994;94(9):1042-1045.
- Fenton M, Silverman E, Vazzo L. Adult HIV/AIDS Medical Nutrition Therapy Protocol. In: Across The Continuum Of Care, Second Edition. The American Dietetic Association, Oct 1998.
- Heller L, Morris V, Rothpletz-Puglia P, Papathaskis P. Pediatric/Adolescent HIV/AIDS Medical Nutrition Therapy Protocol. In: Across The Continuum Of Care, Second Edition. The American Dietetic Association, Oct 1998.
- Bureau Of Primary Health Care, HRSA, DHHS: Program and Application Guidance for Fiscal Year (FY) 1998 for the Categorical Grant Program to Provide Outpatient Early Intervention Services with Respect to HIV Disease. July 9, 1997: 4, 27, 29.