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HIV MEDICAL NUTRITION THERAPY: ITS TIME HAS COME!

Guidelines for Implementing HIV/AIDS Medical Nutrition Therapy Protocols1 was overwhelmingly approved this past September by the Los Angeles County Commission on HIV Health Services (LACCHHS). The intent is that it will become the standard of care. As a result, medical nutrition therapy should become more available as a component of the total HIV medical care provided in Los Angeles County.

Medical nutrition therapy involves the assessment of nutritional status and the assignment of diet, counseling, and/or specialized nutrition therapies to treat an illness or condition. Ideally, it should include the following components: screening, referral, assessment, intervention, and communication with the health care team. The LACCHHS nutrition Guidelines document has acknowledged the importance of an additional component: nutrition outcomes evaluation. The term "medical nutrition therapy" was formalized by The American Dietetic Association and detailed in its 1996 publication, Medical Nutrition Therapy Across the Continuum of Care.2

First approved in October, 1997, this 62-page revised document is part of an evolving collection of standards of care for those infected and at risk for HIV disease. The need to develop standards provided the impetus to form the Commission's Standards of Care Committee in February 1996, co-chaired by Enid Eck, RN, MPH, HIV & Infectious Disease Coordinator for the California Division of Kaiser-Permanente, and Jesse Sanders, MD, HIV/AIDS Division Medical Director at Northeast Valley Health Corporation.

To the greatest extent possible, the Standards of Care Committee sought to include relevant published professional recommendations, scientifically-based clinical practice and documented consumer practice. Standards were largely developed and reviewed in collaboration with existing agencies and expert groups.3 Other standards thus far approved by LACCHHS include ones on counseling and testing, case management, opportunistic infection prophylaxis, antiretroviral treatment guidelines, and medical social work. Standards for treatment education and advocacy, mental health, substance use and dentistry were approved this past October.

The Standards of Care Committee kept in mind that the documents they produced should be applied to all HIV-infected and affected persons living in Los Angeles County. Although the Committee has no legal authority, it envisioned that these documents would apply to any entity providing HIV care - public or private - within Los Angeles County. The Office of AIDS Programs and Policy (OAPP) of Los Angeles County, which administers the Ryan White CARE Act funding and receives priority recommendations from LACCHHS, is now expected to incorporate the Guidelines into its future nutrition-related contracts.

The LACCHHS nutrition document was designed to help all participants in HIV care - medical practitioners, administrators, third party payers, and people living with HIV and their families - to easily understand the role of HIV medical nutrition therapy in the comprehensive medical management of HIV disease.

THE DOCUMENT

The Guidelines for Implementing HIV/AIDS Medical Nutrition Therapy Protocols was developed and reviewed by members of Dietitians in AIDS Care, a group of registered dietitians in the Los Angeles County area.

The core guidelines in the document germinated in the comments to the draft version of the Public Health Service Treatment Guidelines submitted in a joint letter from the HIV/AIDS Dietetic Practice Group and The American Dietetic Association in July, 1997.4 In essence, it seemed then, as now, that it is inadequate to make complicated drug treatment recommendations without including referral for HIV medical nutrition therapy.

The Adult and the Children/ Adolescent HIV/AIDS Medical Nutrition Therapy Protocols5,6 provide the basis for the LACCHHS nutrition Guidelines document. An abbreviated version appears here. The entire set of Protocols are published by The American Dietetic Association (ADA) in Medical Nutrition Therapy Across the Continuum of Care (1998) and can be purchased through ADA by calling 312/ ext. 5000, or via the Internet at http://www.eatright.org/catalog/professional/quality.html.

The LACCHHS nutrition Guidelines document also includes the 1994 "Position of The American Dietetic Association and the Canadian Dietetic Association: Nutrition intervention in the care of persons with HIV/AIDS." The position paper, currently under revision and due for publication Spring 2000, is not included in this issue. It can be accessed at http://www.eatright.org/adap0600.html.

IMPLICATIONS And ACCOUNTABILITY

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 overall well-being and can impact progression in those infected with HIV disease. These guidelines were provided to assist in that effort.7

For the most part, medical practitioners have not been adequately assessing the nutritional considerations when deliberating treatment strategies. Medical nutrition therapy is a medically necessary service and needs to be provided as such.

An HIV-infected adult, adolescent or child should receive appropriate medical nutrition therapy at the same location and at the same time that medical care is received. A registered dietitian (RD) should be available on-site during clinic hours for comprehensive consultations and for frequent quick follow-up visits as required.

The Guidelines for Implementing HIV/AIDS Medical Nutrition Therapy Protocols outline the minimum nutrition services that should be provided to children, women and men living with HIV, along with the accountability of the registered dietitian, who plays an integral role in providing medical nutrition therapy.

In addition to maintaining registration, the RD providing HIV care is expected to obtain additional specialized HIV nutrition knowledge and skills. This would mean that an RD working in HIV nutrition within Los Angeles County should at least be a participating member of the national HIV/AIDS Dietetic Practice Group and the local Dietitians in AIDS Care, and attend continuing education training programs for HIV nutrition and HIV-related medical concerns.

Benefits of integrated early and ongoing HIV medical nutrition therapy are realized in distinct ways. Primarily, the person living with HIV directly gains information and a sense of control, and develops self-management skills that both prevent and reduce complications of HIV infection. Specifically, this can contribute to:

  • Maintenance of appropriate lean and total body weight
  • Reduced risk of food- and water-borne illness
  • Minimized side effects from pharmaceutical therapies, including possibly abnormal metabolic and body shape changes
  • Reduced and/or delayed onset of opportunistic infections
  • Better blood levels of medications through improved adherence to medication schedules and absorption
  • Improved quality of life

In addition, the primary care physician gains the missing nutrition perspective to more ably diagnose and prescribe and thus provide better care. Also, the rest of the HIV medical health care team, by working in collaboration with the RD, gains nutrition information and insight not specific to their scope of practice. Several factors, including integration of the nutrition assessment into the medical chart, scheduling of team conferences, and participation in a collegial environment that includes the registered dietitian, are essential to assure appropriate comprehensive medical care.

Finally, medical nutrition therapy that preserves the patient's health and quality of life conserves the health care system's financial resources. Medical nutrition therapy saves lives and money.

BARRIERS

Who is accountable for the nutritional health of people living with HIV disease?

Physicians, administrators, and third-party payers may be seen as responsible for providing medical care. In order to change old familiar health care routines, they, and to a fair extent, clients, will need to become educated and convinced of the cost-benefit of HIV medical nutrition therapy. It is one thing to have a paper or guidelines with the call for including nutrition in primary HIV medical care; it is another to implement a system. Our society cannot afford to perpetuate a system which neglects nutrition and undermines patients' well-being. Health and healthcare dollars are at stake.

Numerous barriers prevent better implementation. Doctors and nurses, generally responsible for the overall management of their patients, do not have expertise in nutrition, nor do they have the time it takes to adequately provide nutrition assessments and self-management training. In short, nutrition on a day-to-day basis becomes a low priority and is overlooked. Some outpatient settings contract a registered dietitian a few hours a week. While better than nothing, this is far from acceptable. The number of patients seen and the limited time available for each patient make this system inadequate. Inadequate staffing also accentuates the problem of many no-shows, as patients will come in one day for the medical visit and find it difficult to make an additional trip to see the dietitian, who is only there on another day. A referral to a registered dietitian outside the primary medical clinic intensifies this barrier, which few overcome. Additional time off, transportation, child care, travel into an unfamiliar location, and out of pocket expenses are a few of the problems that may prohibit access to medical nutrition therapy.

BARRIERS TO FUNDING

Lack of funding and lack of reimbursement for medical nutrition therapy is another issue. In the past, nutrition services had been part of administrative overhead expenses. While most other medical services have shifted to third-party reimbursement, nutrition services were overlooked. As a result, third-party reimbursement for nutrition services is usually denied or inconsistent at best.

The Medicare Medical Therapy Act of 1999 (HR 1187 / S 660) would provide for the coverage of outpatient medical nutrition therapy services by registered dietitians and nutrition professionals under Part B of the Medicare program. The bill is cosponsored by a bipartisan majority of the US House of Representatives for the second consecutive Congress. This is noteworthy, since less than 1% of all bills introduced are cosponsored by a majority of members.

HIV community stakeholders are urged to rally support for this bill. Patients, physicians and ancillary practitioners, treatment advocates, pharmaceutical companies, nutrition vendors and medical policy makers all have a personal and professional stake in seeing this bill become law. Calling or writing US legislators to express support of this bill is needed and greatly encouraged.

For more information about the Medicare Medical Therapy Act of 1999 (HR 1187 / S 660) see http://www.eatright.org/gov/mntindex.html

Support for changing the way nutrition is included in public and individual healthcare delivery is vital, given the history of nutrition's role in federal healthcare legislation. The lack of commitment to public health nutrition can be traced to 1966 when Medicare was initiated and did not include nutrition as a reimbursable service. The situation deteriorated further in 1982, when Medicare's budget was dismantled. The ramifications of the cuts - both fiscal and philosophical - moved from federal to local agencies to United States citizens. The public health nutrition problems currently seen in this country - obesity, hypertension, diabetes, cancer and cardiovascular diseases - for the most part have increased with little concerted opposition by public health nutrition forces. Nutrition is fundamental to maintaining health and well-being, yet omission of nutrition considerations in health policy and healthcare is the norm. It wouldn't be so bad, if it wasn't so bad.

Against this backdrop, nutrition services have not been an accountable service provided under the Ryan White CARE Act Funding, which is up for reauthorization again. Including in the Reauthorization accountable nutrition services in Early Intervention Programs and AETC are small, inexpensive and vital steps towards assuring quality nutrition care that will ultimately provide greater health benefits.

EDUCATION AND TRAINING BARRIERS

Further, for the most part, AIDS Education and Training Centers do not target registered dietitians for training and education, nor is nutrition part of the training and education for the health care providers that they do train.

Currently there is lack of qualified HIV-knowledgeable registered dietitians. Federal, state and local commitment to train, fund, recruit and coordinate HIV nutrition experts is necessary to resolve this shortage. Excellent HIV doctors came to be as a result of their dedication to provide care and the opportunity to be rewarded accordingly for their services. What does it say about a medical system when a nutrition position that requires a master's degree pays less than the starting salary for a nurse with a 2-year degree?

As the HIV community did not permit the tools for measuring viral load or a class of antiretroviral drugs to be withheld from people living with HIV across the country, they should not allow the withholding of allocation of skilled professionals to provide medical nutrition therapy.

DRUG CLINICAL TRIALS: ANOTHER BARRIER

Drug development, clinical trials and post-marketing data collection have lacked systematic attention to nutrition considerations despite large budgets, extensive regulations, evidence of nutrition's medical importance, knowledge of drug-nutrient interactions and nutrition-related side effects and implications. As a result of not including nutrition parameters in developing, conducting and analyzing HIV clinical trials, we are left with an unfortunate gap in basic science. Further, we do not fully understand how to reach optimal drug levels, why drugs fail, or how to better manage and reduce medication-related side effects. This fundamental inattention to nutrition considerations perpetuates the lack of awareness on the part of all players of nutrition's vital role in HIV medical care. It undermines the care that is given.

TAKING CARE OF OUR OWN BACKYARD

Ferd Eggan, the AIDS Coordinator for the City of Los Angeles, recognized the lack of nutrition services and collaborated with AIDS Project Los Angeles to host a meeting this past June. Leading L.A. County HIV nutrition-minded physicians, registered dietitians, physician's assistants, nurses, nurse practitioners and treatment advocates met and focused on identifying ways to implement medical nutrition therapy and the LACCHHS nutrition Guidelines document in HIV outpatient services.

While all attending were clearly concerned about the nutritional well-being of their HIV-infected clients, only 3 HIV clinics - Harbor-UCLA, the Children's AIDS Center of Children's Hospital Los Angeles, and the C.A.R.E. Clinic in Long Beach - had established HIV medical teams that included a full-time registered dietitian. A physician from one of these model HIV medical teams repeatedly voiced his amazement that other clinics did not function with a full-time registered dietitian, and wondered how they could adequately provide comprehensive care.

"Nutrition needs to be promoted as part of a first-line strategy in managing gastrointestinal side effects related to medications" said Juan Ledesma, Executive Director of Being Alive, People with HIV/AIDS Coalition at this meeting.

"Nutrition-related abnormalities are now major complications of HIV. Nutrition therapeutic interventions are beneficial and need to be stressed more," added Fred Sattler, MD, Professor of Medicine and prominent researcher of nutrition, metabolism, body composition and exercise at University of Southern California.

"People and doctors don't know what they are missing until they have a good RD working with them," said Joseph A Church, MD of the Children's AIDS Center at Children's Hospital, Los Angeles. "We have no patients that are wasting," said Dr. Church, adding that he could not be sure this was the case at many other pediatric outpatient settings.

Most encouraging was Alan Kurz, MD, Medical Director of the Office of AIDS Programs and Policy, who appreciated the incredible necessity of medical nutrition therapy in HIV disease management and agreed that medical nutrition therapy should be available at every encounter.

Since that meeting and the approval of the LACCHHS nutrition Guidelines document in Los Angeles County, there has been a welcome and appreciable effort by some HIV medical care institutions and agencies to better provide medical nutrition therapy.

  • One Ryan White Title III HIV Early Intervention Program (EIP) filled a vacancy for a registered dietitian and increased the coverage from 3 to 30 hours per week.
  • Another EIP, given $30,000 in extra funds, has committed to hiring a registered dietitian consultant part-time, and is pursuing funds for an ongoing full-time position.
  • The major County HIV medical clinics finally submitted a budget request to hire a full-time RD.
  • An HIV medical clinic that primarily serves Latino clients recently hired a Spanish-speaking registered dietitian part-time and is already expanding those hours.
  • The County's Office of AIDS Programs and Policy is working with local registered dietitians experienced in HIV to develop a job description to hire a nutritionist to join the County medical team and develop and coordinate medical nutrition therapy and food programs.

Harbor-UCLA HIV Clinic, another County facility, was recently cited as an example by the Joint Commission on Accreditation of Healthcare Programs, which appreciated its multidisciplinary medical team, which includes an RD that meets with each client at each visit from the initiation of care.

A NATIONAL COMMITMENT TO HIV MEDICAL NUTRITION THERAPY

Recognizing that there have been early and ongoing indications that nutritional issues are closely linked to progression of disease and treatment outcomes, an expert panel is being formed to develop national HIV nutrition guidelines. The goal of this document is to provide guidance about medical nutrition therapy as part of HIV healthcare management.8 The intent of these national guidelines would be to raise awareness of the important role of nutrition in HIV health care, guide physicians in their recommendations to patients, and provide guidance for patients themselves.9

The project has been spearheaded by collaboration of government and non-government agencies. These are the Office of HIV/AIDS Policy at Department of Health and Human Services, the HIV/AIDS Bureau at the Health Resources and Services Administration, the Office of Special Health Issues at the Food and Drug Administration and the Nutrition & HIV Program of AIDS Project Los Angeles. It is anticipated that the document will become a companion to the US Public Health Service Treatment Guidelines, and expected to be available in approximately a year.

MORE INFORMATION

The Los Angeles County Office of AIDS Programs and Policy plans to eventually post the Standards of Care Committee documents on an Internet website. For more information on the Standards of Care Committee, the Los Angeles County Commission on HIV Health Services, the Office of AIDS Programs and Policy, or for copies of the individual standards of care documents, call Diane Walker at 213/. For more information regarding HIV medical nutrition therapy, call Marcy Fenton, MS, RD at AIDS Project Los Angeles at 323/. N

Marcy Fenton, MS, RD, is a registered dietitian and the HIV Nutrition Advocate at AIDS Project Los Angeles. She was a primary author of the HIV/AIDS Adult Medical Nutrition Therapy Protocols, and the Guidelines for Implementing HIV/AIDS Medical Nutrition Therapy Protocols. She is a member of the organizing committee of the National HIV Nutrition Guidelines, currently in progress through the Office of HIV/AIDS Policy in the Department of Health and Human Services. She can be reached at or 323/.

References

1 Los Angeles County Commission on HIV Health Services: Guidelines for Implementing HIV/AIDS Medical Nutrition Therapy Protocols, Los Angeles, September, 1999.

2 The America Dietetic Association: Medical Nutrition Therapy Across the Continuum of Care. The American Dietetic Association, Chicago, 1998.

3 Standards of Care Committee: Mission Statement. Los Angeles County Commission on HIV Health Services, March 1996.

4 Fenton M and Fitz PA. Principles and Guidelines Comments, July 21, 1997.

5Fenton M, Silverman E, Vazzo L. "HIV/AIDS adult medical nutrition therapy protocol" In: Medical Nutrition Therapy Across the Continuum of Care, 2nd Edition. The American Dietetic Association, Oct. 1998. Available through ADA, call .

6 Heller L, Morris V, Rothpletz-Puglia P, Papathakis P. "HIV/AIDS children/adolescent medical nutrition therapy protocol" in: Medical Nutrition Therapy Across the Continuum of Care, 2nd Edition. The American Dietetic Association, Oct. 1998. Available through ADA, call .

7 Los Angeles County Commission on HIV Health Services: Guidelines for Implementing HIV/AIDS Medical Nutrition Therapy Protocols, Los Angeles, September, 1999.

8 Goosby, E: Personal Communication. OHAP, DHHS. August 25, 1999.

9 Klein R: Personal Communication. OSHI, FDA. August, 1998.

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