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Why Nutrition Matters in HIV Patient Care
A Conversation With Jül Gerrior-Schofield, R.D.

By Myles Helfand

December 12, 2013

Nutrition has been referred to as one of the great "black boxes" that remain in HIV patient management. Long overshadowed by dramatic advances in antiretroviral therapy and more medicine-oriented approaches to disease management, we frequently underappreciate the potential for dietary and nutritional interventions to significantly improve patient health and HIV treatment outcomes.

It's time to shine a brighter light on those potential benefits, and to more deeply explore what we do and don't know about the intersection between nutrition and HIV care. To that end, I spoke by phone with Jül Gerrior-Schofield, M.A., R.D., L.D.N., a senior research dietitian at the Tufts University School of Medicine. We began by discussing Ms. Gerrior-Schofield's background in the field.

Jül Gerrior-Schofield: I'm a registered dietitian. I specialize in HIV and nutrition in both a clinical and a research setting; I have done so since 1996, as a matter of fact. I've been around for a long time.

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I came over to Tufts in 1999 because Tufts historically has been and continues to be a leading nutrition school. They have the Jean Mayer Human Nutrition Research Center on Aging. It's a very large component of nutrition, in general. When we were asked to come over in 1999, there was a cohort study called Nutrition for Healthy Living. Dr. Sherwood Gorbach was the investigator and my boss Christine Wanke, another infectious disease physician, was invited to be the coinvestigator and ultimately the director of the program.

The cohort study is looking at the effect of HIV on nutritional status, and vice versa. It's for all people living with HIV. We were seeing participants every six months, and we followed them for 15 years. We've learned a lot, especially in the pre-HAART and post-HAART era.

When you look at the general audience, or at the HIV population across the country, I don't think nutrition is being discussed very often. Our data was out there, although different in the early days because the issues were different. It's still out there, but other areas of HIV care just take priority.

Some of the information I can share today is about some of the data and information that we've learned. But like I said, generally speaking, as people have gotten healthier living with HIV, nutrition has taken a back burner. It's not as pressing as it was when people were wasting, back in the early days.

Myles Helfand: Would you say that it's the rise of antiretroviral therapy that has caused a reduction in the amount of attention that we pay to nutrition?

Jül Gerrior-Schofield: I think so. Back in the early phase of the epidemic, wasting was so critical that everybody was focusing on how do we manage it? There were a lot of studies trying to combat the effects of wasting syndrome using factors like human growth hormone and Megace. Megace is a product that helps to increase appetite. People were dying of malnutrition. It was a big, huge area.

Just like in cancer, when they have this terminal illness -- which is what most people with HIV felt they had back then -- they were taking all kinds of different cocktails of supplementation: echinacea, milk thistle and all kinds of things that they were grabbing on to because there just was no way of knowing how people were going to do on the early antiretroviral meds. And the meds were so toxic, anyway.

People gained weight, but the weight that they gained was actually fat, not lean muscle. So there was a push on doing analysis of body composition in the early 2000s. That was also very critical: What is your lean body mass? When you weigh yourself on the scale, you may have gained weight, but is it functional mass? Or is it actually fat mass?

As disease management has progressed, physicians are looking at not just the virus anymore. "Let's look at the virus, look at the CD4 count" -- that was our concern, rather than looking at the whole body. There's more to it than just the virus. There's coinfection with hepatitis C; and there's diabetes; and there's cardiovascular risk; and there's primary care, which also takes an enormous amount of time. A lot of HIV providers are now doing primary care. There's just little time in clinics. Where does nutrition fit in?

Unfortunately, it takes a real backseat. But I believe, and the people I work with believe, that nutrition can become a really critical component of making people well, and reducing their risk of progression to cardiovascular disease and things like that.

Myles Helfand: Walk me through a couple of the key ways in which nutrition plays such a critical part of HIV care that it would warrant a greater level of attention from providers who may not feel they have the time. How do you make that case?

Jül Gerrior-Schofield: Here's a good example of how nutrition can actually help, rather than just say, "Oh, we know it does great things." When we look at lipodystrophy patients in our study, we look at their diets; we analyze what they're eating.

When you look at people who eat fiber -- they're getting fruits and vegetables and whole grains, particularly fruits like apples and pears, which provide pectin -- the people who eat high fiber are actually at reduced risk of developing increased obesity or trunk fat. We were able to see that in our analysis. It just makes us realize that doctors can say, "Hey, are you eating your fruits and vegetables?" That little bit of knowledge, it can really go a long way.

We also know that eating high amounts of omega-3 fatty acids, which come from salmon and sardines and plant-based vegetables (flaxseed, walnuts) -- and you can take actual capsules [as a supplement] -- can lower triglyceride levels, which are a very strong independent risk factor for an increase in cardiovascular risk. So a couple of simple nutrition tips can really make a big difference.

At least a fish oil capsule is not going to cost as much as something like TriCor [fenofibrate], which is a medication that's going to reduce your lipids. Getting them off of some medications would be great.

Myles Helfand: Are there particular subsets of patients for whom you would really want a care provider to be taking those extra 60 seconds to ask about diet, ask about nutritional habits, and maybe push them in a better direction?

Jül Gerrior-Schofield: We have special populations, for sure. But my feeling is that everybody who is diagnosed with HIV should have a nutrition assessment. Obviously, that can come from a dietitian very thoroughly. But in general, everybody's getting weighed. Doctors are weighing patients. So we have a general idea of their body weight and their height; their BMI. That's number one, because we want to prevent them from going down this path of developing high lipids, obesity and other things. That's the basic person.

The second person, I would say -- and they're not in a particular order, but: those who come in with insulin resistance or pre-diabetes, which is more frequently these days. Hepatitis C is another special population. And I would definitely say people who are not getting access to food. A big question I would have is: How easy, or how difficult, is it for you to actually get a meal? Because approximately 35% of our cohort is defined as food insecure.

These are just basic questions. If they don't have access to food, then we can link them up with services -- social work and other things.

Take the example of someone who has cardiovascular risk. What does that mean? More frequently patients are developing these surrogate markers of cardiovascular disease in HIV. We know that, for example, high triglycerides and low HDL cholesterol, which is the good cholesterol, are the two most common lipid abnormalities in HIV.

Generally, providers are getting these lipid panels. So we would be able to see who's having high triglycerides, who's having low HDL; and that's a flag for a doctor to follow up with, "What are you eating?" and so on. As I said before, diet can play a strong role in trying to help reduce these factors. That's a very nutrition-specific thing that can be done.

I was speaking to a doctor earlier today who said, "Nutrition only comes to my mind when I see an obese person," because she's immediately thinking weight loss, and trying to help the patient's hypertension and things like that. She doesn't really think about when people are coming in underweight so much, because patients are generally asking for Ensure, which is this nutrition formula that is helpful if they're not able to get access to food. But I would rather try to educate people on the right kinds of food to eat, and rely less on these supplements, if we can afford to.

Myles Helfand: On the topic of cardiovascular risks: Especially in the context of the recently updated statin guidelines, we're looking at an ever-more aggressive medication treatment approach when it comes to managing cardiovascular risk. At what point does a clinician say, "I don't have the time or the space to deal with this whole deep, complex series of issues that patients may be facing in their life that prevents them from having proper access to well-balanced diets"? It would seem a lot more convenient to just say, "We're just going to give you a statin and try to make sure there's no drug interactions."

Jül Gerrior-Schofield: It's an easy out, so to speak. To be honest, I just don't think that nutrition is on their radar, in general. It doesn't take priority. Unless you have a dietitian in the clinic that's waving their arms -- "I'm over here! I'm over here!"

Generally, dietitians will prescreen the clinics as they come in. But with more cutbacks and financial problems, in some of these health centers there's just less room for services like nutrition. So it does lie on the provider to try to ask these questions.

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In Boston, we're very fortunate -- and I know in Manhattan, you're fortunate -- because there are a lot of programs out there that are geared toward HIV-positive individuals that provide access to meals, or subsidized SNAP benefits. In Boston, for example, we have farmers' markets, where patients who have these SNAP benefits -- it's like the new food stamp where they can double their bucks -- they can go to buy five dollars' worth of vegetables, and they can get double that for the value. So they can get $10 worth of fruits and vegetables with their Bounty Bucks.

It comes down to knowledge and awareness. I'm afraid that we just don't see this happening enough in our HIV clinics today.

Myles Helfand: You just identified two major barriers to this kind of access: funding and a general lack of awareness. It's interesting: In our HIV Management Today series, we started this year with another aspect of HIV care that I think -- not in an identical way, but in a similar way to nutrition -- is frequently neglected: the critical effect that mental health issues and psychological issues can have on every aspect of HIV care.

What you've been seeing so far suggests that it's the same kind of thing for nutrition; it's this often-neglected area that nonetheless can have effects across the board for a person living with HIV. But yet there is that -- almost a barrier to awareness, not just on the part of the patient, but on the part of the clinician, right?

Jül Gerrior-Schofield: Yes, definitely. We [at Tufts] are lucky -- again, I keep saying we're lucky because we study this, and so we have a focus on it -- we have a different mentality when it comes to talking about nutrition and getting the message out there. People know of our study. They've been in it for many years. So we're fortunate like that. But there are still a lot of people who just don't know about our services.

I don't think that providers realize how food insecure their patients are, because I think the patient doesn't want to discuss this often. It's a humbling experience to have to go in and say, "I don't even know where I'm going to get my next meal."

I've been doing a lot of work with women, and women are generally at risk, mostly because they are the last priority for themselves. They have grandkids and kids, and they just don't take precedence in their own care. They're a huge population that I worry about, in terms of just getting access to food and generally taking care of themselves.

We have a fantastic program in Boston for women called HOCC or Healing Our Community Collaborative. This program is for women who are HIV positive, at risk for, and affected by HIV. They are served a hot meal once a month coupled with education and health promotion by community partners in the health field (nurses, dietitians, social workers). More programs like this are needed to support these vulnerable populations.

Myles Helfand: Where is the line in terms of responsibility? Is it the responsibility of you guys to go reach out to all of these various clinics, hospitals and doctors' offices, to try to educate them and advocate for a greater level of awareness and intervention with their patients on nutritional aspects of care? Or is it for them to somehow become more aware? Is it for them to try to change their mindset?

Jül Gerrior-Schofield: It probably goes both ways. It's important for us to be out there, as nutrition providers, and really get the message out. We generally are pushing this only because we may have a new study, for example, and we're looking for participants. Then we go out and canvas all of our clinics in town and say, "We're looking for people who want to go on this special protein to help reduce diarrhea," for example. But I think it goes both ways.

We're fortunate also at Tufts because the medical students that come out of our institution actually have a lot of nutrition training. That's, again, because we have this very nutrition-centric focus. But if you poll the medical schools across the country, you're going to find that very few have nutrition courses. If we could change the structure of how things are going, I think it starts there -- to get people thinking of nutrition. But we both need to be advocates for this.

Also, empowering patients is huge. We do this in our studies. We're able to educate them on the right types of foods. We try to stay away from the supplement business, and encourage more food -- whole food -- and how to get your calories from these nutrient-dense sources. Then they can tell their friends, and they can educate their families.

Empowering the patient is really critical, as is empowering the patient to then talk to the doctor about some of these questions, and therefore rolling it back to the doctor, referring to nutrition.

Dietitians need to take more of a presence in these clinics and in this environment. There's a lot of us out there. It's just tough to get the message across everywhere, especially rural areas and other places where resources are limited.

Myles Helfand: What do you do on that front? How do you access those patients? What can you say to providers in rural areas who might throw up their hands at all of this and say, "What am I supposed to do about this?"

Jül Gerrior-Schofield: Perhaps we use a little more technology -- we can put on conferences and maybe Web-based programs for places that are more rural. I think education is going to have to be the push to try to get the messages to the physicians.

The truth is, it can be very simple messages. Some of the things I say are just, "Are they able to eat breakfast?" for example. Whole grain cereal with a low-fat dairy -- milk or equivalent -- and a piece of fruit. They can get a third of all their fiber grams just in the morning. So it shouldn't take long to start asking simple questions.

In a way, it feels like we have this huge task on our hands. But if we can just start educating these institutions, these community centers, and hope there's going to be some trickle down, I think that's our best bet.

Myles Helfand: It's interesting, the way that you just put that: It can start with just asking questions. It doesn't even necessarily have to be like you've got this encyclopedia of information as a provider that's ready to go. You just start asking that question, and it might get everybody's minds thinking more in that direction.

Jül Gerrior-Schofield: Right. That's my hope, really. They're not asking the questions. There's just this void. Like I said before, the barrier for the providers is that they have so many other things on their mind. "I want this guy in a drug addiction recovery program," for example. I see that person and I see, if they're actively using, they're probably grossly underweight and malnourished, and not prioritizing their nutrition. And that's understandable, given their state.

All these things have to get in line. Just asking the questions and getting people access to food -- there are some basic things that are going to go a long way.

Myles Helfand: I don't suppose you guys have a one-page checklist? Like, The 60-Second Provider's Guide to Asking Questions?

Jül Gerrior-Schofield: Honestly, I don't. But based on all of these questions, I'm going to come up with one.

Myles Helfand: It sounds like that's exactly where this line of thought is going: If a provider doesn't have time, and they're not thinking about nutrition -- well, maybe if they had a sheet of paper that had the questions listed on it, they would.

Jül Gerrior-Schofield: Maybe they're worried about opening Pandora's Box. That's what your point was earlier: They don't have time for this; they don't want to kind of deal with all this. But get the nutrition resources in place: Find where your dietitian is, what's his or her number, how does a patient get in contact. You can leave it with the patient. But you've got to ask the question first, or we're never going to know. I think that's the key.

I know in Manhattan, and I'm sure in other communities:, we have Community Servings; we have the Boston Living Center; we have a couple of really key organizations that provide meals to people who are HIV positive. It's wonderful. People need to be linked with these services that are out there. They just need to have access.

Myles Helfand: Which is a challenge in this funding climate, as you have said before.

Jül Gerrior-Schofield: Right. Absolutely.

Myles Helfand: You had mentioned earlier in the conversation that you guys are not a huge fan of supplementation if people have deficiencies. Why is that?

Jül Gerrior-Schofield: It's different if they're deficient. If people are diagnosed with vitamin D deficiency, then we would want to fill up their tank with vitamin D supplements. But what I want to get away from is people, rather than eating quality nutrition and getting their adequate intake, relying on these supplements. "I'm taking a multivitamin. That way, I don't have to eat my fruits and vegetables, because I'm going to get my antioxidants and my other things in the pill." We want to get away from that.

We actually recommend a 100% complete multi-mineral complex. I would recommend that for everybody who is HIV positive, just to get that insurance. But I'm not necessarily going to start recommending extra C, extra D -- which is what I used to do. We used to do that, as a general rule, based on the literature back then, which suggested that people would progress to AIDS more rapidly if they were low in selenium, for example, or B12. So we would push all these supplements for our patients.

Nowadays, the evidence is really murky. There's really not a lot of evidence to suggest that they're actually going to do better with all these vitamins. So we'd rather put that money that they're going to spend on vitamins into the food. We want to teach them where to get your vitamin D in food, rather than a pill.

Myles Helfand: Would you say the same is true of vitamin C, which had long been colloquially associated with greater ability for a weakened immune system to fight off infection?

Jül Gerrior-Schofield: I would approach everybody individually. There may be someone who would more likely be a candidate for vitamin C. But I wouldn't be comfortable suggesting everybody with HIV take vitamin C to prevent these problems, because the truth is that there's been debunking evidence for all of these individual supplements.

Individual supplements also can interfere with the delicate balance of absorption of your nutrients. If you take excess C, you may not get your zinc, for example, in another form.

There's a lot of controversy around taking extra individual supplements. Unfortunately, there's just not a lot of good studies. It's not to say that supplements may not be useful; we just haven't had good, randomized, controlled trials to actually support the overarching recommendation of these individual nutrients, even in Africa and other countries.

If we can invest our time talking about where to get vitamin C in food, and try to focus our energy on teaching people the right things to eat, I think we're that much better off.

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Myles Helfand: Correct me if I'm wrong, but it's easier, in terms of public assistance, to access food aid than it would be to get supplements paid for, isn't it?

Jül Gerrior-Schofield: Yes. Absolutely.

Myles Helfand: Do ADAPs normally cover vitamins?

Jül Gerrior-Schofield: Multivitamins, in some clinics, have been covered. They're giving away multivitamins, and that's great. I'm not sure about ADAP. I think a lot of it may be Ryan White funded, depending on where you are and what you're offering.

There are some other things: For example, glutamine is a protein powder, an amino acid that's been very useful at improving the gut. That's a very specialized product: If someone comes to us and has really intense, watery diarrhea, I would try some other nutrition things to intervene first, like reducing saturated fat and adding soluble fiber. But then there are these little arsenals of supplements that can be very useful.

Myles Helfand: Another thing you got at a little bit there is that the side effects of some antiretrovirals can involve a lot of gastrointestinal distress. That's where nutrition can also come into play: all the nutritional alterations that can help alleviate diarrhea, gas, or any number of other gastro issues.

Jül Gerrior-Schofield: When I started working in the field in '96, I was tasked with, "OK, Jül, do you want to work with patients who have diarrhea who are HIV positive?" And I'm like, "Absolutely." It was so prevalent. We saw a lot of watery, loose stools. Not only the meds, but HIV itself, was really altering the gut, and causing a lot of problems with malabsorption. Patients were losing weight.

What we did was, we put everybody on this formula called Lipisorb. Lipisorb was made up of these small protein peptides and medium-chain triglycerides - similar to coconut oil, medium-chain fat -- and then simple-to-digest carbohydrates. We put our patients on it and we said, "Don't eat anything else, but drink this formula." This formula reduced stool volume remarkably. It put weight on our patients, and they just felt better. It was purely a nutritional intervention. And it's such a good feeling to see.

It went away for a while: We don't really talk about diarrhea, because it wasn't as common. Nowadays, it's interesting: I'm doing another diarrhea study. Here we are, 2013, and my job comes full circle. We're using what's called a serum bovine immunoglobulin. It's a protein isolate that is supposed to also help nourish the gut and reduce stool volume. I've got many candidates out there that are suffering from medication-induced diarrhea. We're hopeful that this is going to make an impact. This is considered a medical food. It's still in a research phase, so we're not sure how it's going to do in HIV, but it's been studied in things like Crohn's disease.

There's a lot of interesting things that are being done. It's just about getting awareness again, and getting people to understand that nutritional options are available.

Staying on antiretrovirals is huge. What we don't want is for people to be suffering these side effects if we can help manage them. Even lipodystrophy, for example -- people want to come off of d4T [stavudine, Zerit], or whatever they're taking. Or they know Norvir [ritonavir], for example, is causing their diarrhea, so they want to jump off that.

This is where nutrition comes in: to try to help manage these symptoms. If we can get them to control their diarrhea by changing their diet, or doing something like this, these are the tangible things that we can make a difference in.

This is where we're often brought in. Because if a patient doesn't have room to move on their antiretrovirals, we want to be able to help support them in that.

Myles Helfand: Is there anything that you wanted to add in that we haven't already discussed?

Jül Gerrior-Schofield: Again, the big question for physicians, if this is going to be helpful, is to just have the conversation. Start the conversation with access to food: Are your patients getting enough? I think developing a checklist is something that I would like to promote. And if I come up with it, I'll share it with you guys. But I think that's the critical conversation starter, just get the awareness out there.

It's been a great run, working in this field of nutrition and HIV. I really love what I do. I think we've made a good impact in improving the lives of many patients with HIV with our nutrition interventions. So I'm hopeful that this can be translated across the country. If people are enthusiastic about learning about nutrition, it definitely warrants a discussion. And it does start in the doctor's office, for the most part.

We, as nutritionists and dietitians, have very detailed and thorough nutrition assessments geared for people with HIV and other diseases. We can modify this simple tool so that a clinician can use it and we can educate them not to panic -- if they start to actually see problems, not to say, "Oh, no, I don't have time to deal with this." Just make that referral to the dietitian.

Dietitians are everywhere in this field, or in general. They're part of the medical environment, the community. They're there. They just need to be accessed.

It's also very important that the patient has a good experience with a dietitian, to help to create that value. Then they'll come back. What often happens is, they'll have maybe one visit with a dietitian, and then you don't see them again. It's all about trying to get that relationship.

That's true for all problems in all different disciplines; it's not just specific to HIV. But it's hard to get people, in general, thinking about their nutrition, paying attention to their diet, maintaining their weight and staying balanced. It's difficult for a lot of people, not just people who have illnesses. But it makes it that much more complex, when you're dealing with someone who does have a chronic disease, and has a lot of other priorities.

We always say, "We're not the food police. We come in peace." I'm not here to completely inspect your diet. We're very realistic about what's reasonable for somebody, and what their goal is.

We just want them to think about more balance. It's baby steps: You set small, realistic goals to get them to the next place.

Myles Helfand: Very similar to mental health, it's avoiding judgment. It's providing a supportive environment, rather than a harsh environment.

Jül Gerrior-Schofield: Right. Absolutely.

Myles Helfand: Thank you, Jül.

This transcript has been edited for grammar and clarity.

Myles Helfand is the editorial director of TheBody.com and TheBodyPRO.com.

Follow Myles on Twitter: @MylesatTheBody.


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