Profiles

Conversation with Dr. Ruth Berggren

In the days after Hurricane Katrina devastated the Gulf Coast and the levees broke resulting in flooding and major destruction, Dr. Ruth Berggren was held hostage by the chaos at the Charity Hospital of New Orleans. As she continued to care for patients, she faced conditions for which no medical training had prepared her. Dr. Berggren is an associate professor of medicine and an infectious diseases specialist working on HIV/AIDS at Tulane Medical School, New Orleans. I sat with Dr. Berggren and talked with her about HIV/AIDS and lessons learned from Katrina.

Shadi Farhangrazi

HIV/AIDS in the U.S. and the world

Shadi: Where do we stand here in the U.S. with HIV/AIDS today?

Dr. Berggren: Today we have over a million people with HIV in this country. Many of them are unaware of their HIV status because they have not been tested. We have made tremendous strides in being able to diagnosis and treat this disease. It is so dramatic that until a few years ago, HIV was a death sentence for people. Today, we tell people (who are HIV positive) that if they take their medications, stick to a regimen and come to their clinic visits, they can expect to have a life span that is not significantly shorter than that of other chronic diseases such as diabetes or hypertension. In a sense, the dramatic improvements in outcomes and life expectancy have also led to a trend for some people being less careful. We have started to see a lot of young people take more risks. We continue to be concerned about prevention and community education.

Another area where there are increasing concerns is unacceptable transmission rates is in the Southeastern United States—states like Louisiana and Florida and all through the Gulf Coasts .This is the region where we are seeing the growth of the epidemic disproportionately affecting young black females. It is particularly problematic because we have not been able to educate at schools as freely about prevention, and we have a population of individuals who come from lower socio-economic status and with poor access to quality education. So we are disturbed and concerned about the growing epidemic as it affects African Americans and particularly young female African Americans in the Southeastern United States .

In addition, to the disturbing transmission rates in that particular population, we have also experienced fewer of the benefits of the highly effective anti-retroviral treatments in that part of the country. We have access to medication. We have access to medical expertise. The drugs, doctors and the clinics providing multidisciplinary services are here. Yet if you examine the hospital utilization rates in the Southeastern United States, you find that there has not been nearly as big a decline in hospital utilization as has been seen in the rest of the U.S. We are struggling to see why that is the case and have done some studies in New Orleans that are beginning to elucidate some of the problems.

Globally, we are seeing what is called the “feminization” of the epidemic. Throughout sub-Saharan Africa , a little more than half of the cases are in females. We are not necessarily seeing the same trends in the industrialized and Western Europe , Australia or the U.S. However, we are seeing that kind of trend in the Southeastern United States amongst people of color and people from the lower socioeconomic strata.

Shadi: What is the picture internationally? You just gave us a picture of what the epidemic looks like here in the U.S. What does it look like internationally, for example in Asia and Africa ?

Dr. Berggren: The epidemic continues to be very active in sub-Saharan Africa and parts of Southeast Asia . The majority of the global cases are found to be in sub-Saharan Africa –I think close to 29 million people where overall globally we have close to 40 million cases. So more than half of the cases are found in sub-Saharan Africa . In Africa , as I mentioned earlier, the epidemic is increasingly affecting women more than men. It has passed the 50% mark in terms of the gender differences. There are countries, (for example) regions of South Africa and neighboring countries of South Africa, where if you examine the age group of women of reproductive age, sometimes one in three or one in four are HIV infected. There are countries where the entire segment of the population representing the productive young adults—the mothers and fathers, the people who could work, go to the market place or work in the fields—are dying or dead, leaving a population structure which is highly abnormal with the elderly people and grandparents caring for grandchildren and/or the head of the household is actually a child.

The majority of these people are not accessing care. When we initiate scale up to provide HIV care to these countries we usually start by trying to diagnose HIV among pregnant women. It makes sense because we can do one test which will affect two patients: the mother and the unborn child. It makes sense because pregnant women engage in unprotected sex and they have a clear risk factor for contracting HIV as well. And also once you make a diagnosis for HIV you can also prevent the transmission from the mother to the child. A lot of the progress has been made in the last decade to document what the most effective, easiest and cheapest ways of preventing transmission from a pregnant mother to the baby are. Some of the regimens that have been found to be effective are actually quite affordable. This is the approach that is being taken to help a lot of people globally.

HIV/AIDS in New Orleans

Shadi: How big was the population of the HIV/AIDS patients in New Orleans before Katrina?

Dr. Berggren: There were about 7000, and at our public clinic we took care of 3000-4000 of them. We do not know how many of them are actually back in New Orleans . I have asked the Office of Public Health to see if they know. We need to know so that we have a good idea of the healthcare needs of this population post-Katrina. They said that they know the whereabouts of 1100 of these people. Of those 1100 people, we now have 600-700 of them who come to us for treatment, and the rest of those people are in different areas of Louisiana and are being treated at other public clinics. To this date 95% of those who are coming in are reporting interruptions in their care either for the entire time since Katrina or for a period over a month. This is of great concern to us because of the potential for drug resistance development. So the greatest fear right now is that there may actually be a significant population of drug-resistant HIV-infected people.

Shadi: Your clinic was actually located inside the Charity Hospital . Is that right?

Dr. Berggren: Actually, there was an inpatient ward which was dedicated for tuberculosis [TB] and HIV in the Charity Hospital , on the ninth floor. It was a very special ward and a Center of Excellence . They had to obtain special funding to actually renovate this one wing of the old Charity building. It was the ideal place to hospitalize any one with a transmissible infectious disease. All the patients with TB and HIV-related opportunistic diseases were housed there. There were 24 beds and they were essentially always full. If they did not have 24 patients there, it was because the hospital had cut down on the nursing staff, and they could only nurse fewer patients. That was the inpatient situation which I will come back to later, to tell you more about why it is important for us to recreate that ward as a Center of Excellence . That ward, by the way, was primarily run by Tulane University , although LSU [ Louisiana State University ] participated 50/50 in staffing it. It was primarily a Tulane-driven site.

The other site was an outpatient site which was an LSU-driven site with the participation of Tulane. That clinic, called the Hopp Clinic, was on South Roman Street about a quarter mile from Charity Hospital . It was a nice comprehensive care site where you could get different services: mental health, GI consultation, dermatology, dental clinic, social services, and radiology, all under one roof. Where we stand now is that the outpatient clinic was severely damaged but not to the point of no return. It is now being renovated. The pharmacy was looted twice (after Katrina), and drugs were stolen, including antiviral medication. It is very distressing to have anti-retrovirals get into the community only to be misused with the potential for creating drug resistance. To reestablish care, the clinic has recreated itself in a much scale down version. There used to be 120 people staffing at the Hopp Clinic and there are now only 30. The clinic is functioning out of an old building. It is very rudimentary with none of the multi-disciplinary services we used to be able to offer. It basically has an exam room, doctors and patients. We write prescriptions, but those prescriptions have to be faxed and the patients have to come back one full week later to pick up the drugs because we do not have an HIV pharmacy within New Orleans itself. If any of those people need X-rays we have to send them to the Convention Center where there is a temporary MASH unit (we call them the Spirit of Charity). The logistics of getting the results and then getting information to the patients are all difficult.

There is a lot of work to be done in finding the [former] patients and finding out if they have been getting care and how many now have drug-resistant HIV. It will affect future decision making about anti-retroviral therapies.

As for the inpatient clinic, right now, if you have HIV and an opportunistic infection your provider has to get on the phone and start calling all the private care facilities that are still operational to see if we an send the patient there. Sometimes we have to send the patient as far as Baton Rouge .

Shadi: We have heard that Charity Hospital is closed and they are not going to reopen it.

Dr. Berggren: The Charity Hospital is closed. It has been said that it will not open as a medical facility. The damage to the hospital was too great. We have this other hospital which was the part of the same system. The University Hospital is being renovated now and will reopen later this year. So we will have a hospital where we could put the patients but it will be a lot smaller and we will not have the trauma center we had at Charity. My concern from the perspective of an HIV care provider is that we would like to recreate that dedicated ward. We know that the patients got better sub-specialized care that reduced the duration of hospitalization and improved outcome when we hospitalize them at a sub-specialized ward. There is a need for a ward like that in New Orleans and in the Southeast U.S.

As an academician who is also interested in teaching about the global scale of HIV, it was a great place for teaching. We had students come for training from Africa, Southeast Asia, the Caribbean and even Canada and Europe . I had students from all over the world coming to do rotations with me, because this was a place where you could see all the manifestation of AIDS from the beginning to the end, every opportunistic infection that you could name—in a sense, Third World cases but in a First World setting. Charity was a very modern facility and an ideal place to teach about HIV/AIDS.

HIV Vaccine

Shadi: One of the questions that the public usually asks is how come we don't have an HIV vaccine yet.

Dr. Berggren: There are many obstacles to finding an HIV vaccine. One of the concepts to think about is that, for those diseases for which we have successfully made vaccines that work and protect, those diseases elicit immunity themselves. For many diseases if you get the disease, then the disease elicits protective immunity to the disease. So, for example, if you get chicken pox as a child, you develop immunity to the disease as an adult, unless you are immuno-compromised. We do have a chicken pox vaccine. When we have diseases where there is demonstrable natural immunity, we can be successful in making a vaccine. In the case of HIV or other diseases like hepatitis C, there is no way to elicit natural immunity. For example if you get hepatitis C and you get cured by treatment, you could potentially still get infected by hepatitis C again. So there is no protective immunity. Those are some examples of the diseases for which the body does not seem to be able to respond by having future protective response.

The other concept to consider is that there has been a long history of efforts to make an HIV vaccine. There has been a lot of interest in trying to get immune responses to the “envelope” of the virus. The vaccines that were made were made based on the envelope configurations of the in-vitro laboratory strains. It turned out that those vaccines were not at all protective against the strains that are in nature or what we call the wild type strains of the virus. The virus mutates rather rapidly, so it demonstrates what we call immuno-escape. The immune system actually develops strong responses [to the vaccine] and results in reducing virimia. These responses are both antibody and cell mediated. However, what happens is that the virus rapidly mutates [changes its “envelope” proteins] and escapes from these responses.

Then, there is the issue that the HIV virus is actually enveloped by a complex network of glyco-proteins or sugar-proteins. You can conceive of it as a “sugar dome”. A term coined by a number of people to describe the basis of what the exterior of the virus looks like. The sugar dome acts as a protective umbrella, hiding those [protein] domains on the viral surface—those domains which could otherwise be important in elucidating immune responses. So, in other words, it is hiding the important immunogenic areas.

Another problem is that when HIV goes through its life cycle and it buds out of the host cell, as the virus is budding it takes with it a piece of the host membrane. You can think of it as a wolf in sheep's clothing. It is taking a little piece of the host and putting it on its surface and that also fools the immune system because in a way HIV looks like self rather than non-self.

The final important concept is that HIV integrates itself into the host genome [the virus carries an Integrase enzyme permitting it to integrate its own DNA copy into the host DNA] and so you can have these CD4+ positive T-Cells that are infected. If those cells are not activated, they can sit there for many, many years. Now we know that those cells can live with integrated DNA for 60-70 years. There is no way for the immune system to see that as an infected cell when it is not activated and the virus is not replicating. That is another challenge. The virus has ways of hiding from the immune system.

Shadi: So it sounds like there are many problems the scientists are facing in finding a potential vaccine for HIV.

Project in Haiti

Shadi: The first time we talked you mentioned briefly about your project in Haiti . I think people would be very interested in hearing about your work there.

Dr. Berggren: We were asked, in 2003, to provide technical expertise and clinical education for preventing maternal-to-child transmission of HIV. We are working in Mirebalais in the central plateau of Haiti. The population we serve includes many satellite villages so there are about 200,000 people affected by our program. Our HIV program was integrated into preexisting maternal and child health services. These services are very rudimentary in many ways but still quite important. The way the organization works is that since many people are very poor and do not have access to transportation, they can not get to the centralized hospitals, so care has to be brought to them. The organization we work with, MARCH (Management And Resources for Community Health) which is a Haitian Foundation, has central offices in the town of Mirebalais . Every day a couple of jeeps or trucks leave Mirebalais and go to one of the satellite villages to provide preventive services for mothers and children. We have something like 28 locations surrounding Mirebalais. The idea is that no woman should have to walk more than five kilometers to get a healthcare visit.

One of the innovative things that March has done is to incentivize the mothers to come to these visits and to utilize food services by providing food supplements. Things are so desperately poor in Haiti that the food supplement is a major draw. This is being funded with U.S. surplus grain and by organizations like Save the Children and USAID. The system works in the following way: A woman who is pregnant identifies herself to the local community health agent. The local community health agent tells her that as soon as she enters the second trimester, she is eligible for a monthly food ration. The food ration consists of wheat, lentils, and cooking oil and has enough calories to feed a family of five for two weeks. It is a fairly significant allocation of food.

The key point here is that we have a very powerful incentive for women to come in and get care. The incentive is being offered in a non-specific manner so that we are not going specifically after HIV-infected people. We are not saying that you are getting this because you might be HIV infected. Programmatically, it is being done because pregnant women who are poorly nourished are prone to have low birth-weight babies and low birth-weight babies are at high risk for death; and we would like to reduce infant mortality and improve maternal health. But the women come because they are getting this food supplement. When they come to the dispensary or the mobile clinic site, they are registered. There are food monitors who distribute and allocats the food. While the women are waiting, they hear a health message by a local community health educator who talks about a variety of things including the importance of vaccination, pre-natal care and screening. The women are then examined usually by a nurse or a mid-wife. In these areas usually there are no physicians. They are screened for urinary tract infection and sexually transmitted diseases and other things for which they could be treated. Now we have added with the involvement of Tulane University screening for HIV, syphilis and anemia. Previously, these women did not receive any blood draw for health screening at this stage. When we initiated it, we were careful to integrate this with the previous services. We did not want to declare that we were there to screen for HIV for fear of stigmatization. The health message says that we now have screening tests for you, which we did not have previously and we can look for problems in your blood like low blood cells or for infection which you might get from sexually transmitted diseases.

The acceptability of the screening has been tremendous in Haiti , and it is very different from what has been seen historically in Haiti and parts of Africa , where women have refused to get tested for HIV because of the way the message was presented. The other critical thing is that we now have treatments to offer. In the past it was fear that if they had HIV, then they felt that they had to go and kill themselves, people would ostracize them. People wanted to avoid learning that they had HIV in past. This breaks the cycle of transmission. If you learn that the woman has HIV then you can prevent the transmission to the baby and you can ask the husband to come and get tested.

Another unique aspect of our program is that HIV testing is brought to their villages rather than for them to go to a large urban center to be tested the way it is done in many parts of the world. Another unique aspect of our program is that we require that in order for an HIV-infected person to get HIV drugs, they have to be paired up with an “accompagnateur”. This is a French word for an accompanying person. This specifically is a patient-selected advocate and we have criteria that we use to select the accompagnateurs. HIV is a disease that has a lot of stigma around it and you want to make sure you trust that the person accompanying you is not going to tell your story on the street. This is a patient confidante who helps the patient to take the drugs everyday and offers encouragement and support. They also offer much needed psycho-social support. This also insures adherence to taking the drugs on a correct daily regular schedule hence preventing drug resistance. The work of the accompagnateurs is very time consuming and they are offered an honorium which is about $40 a month.

Shadi: Where does the funding for the program come from?

Dr. Berggren: MARCH applies for grant funding from a number of different sources. They include the Centers for Disease Control and Prevention (CDC), USAID, Save the Children, and now they have formed an allegiance with Tulane University through myself and Dr. Holly Murphy. For the accompagnateur program, in particular, Tulane University has raised money to pay the honorariums. We have written a lot of small grants for pharmaceutical companies and charitable foundations to keep that program going. It has been a very worthwhile program because as we have demonstrated that program works and is sustainable. It is now becoming prioritized in organizations like the Global Funds for Tuberculosis, Aids and Malaria. There are also colleagues at Partners for Health who are based at Harvard University and also working in the plateau of Haiti who are really the ones who initiated this and it was important for us for Tulane to come along and duplicate, sustain and join the efforts.

Lessons from Katrina

Shadi: Let's talk about Katrina and the lessons learned. We all watched and were horrified that it took days after Katrina hit, to evacuate patients, staff and physicians from Charity and University Hospitals . Please tell us what you think are the lessons we learned or we should have learned.

Dr. Berggren: There are many lessons. First, before the storm we knew that we were in a floodable area. The building was constructed with all the important things being in the basement. The food supply was in the basement. The back up generators were there. For several years it had been proposed to the state legislature for $8-10 million for changes to be made to the building, but they turned it down. Advanced preparedness is a key. So you know that these changes have to be made but you can't find have the political will to do the right thing. So there needs to be more community awareness and education about the importance of these things.

Another element relates to the preparedness of the staff like myself. Last year, I had to attend mandatory sessions on ethics in medicine where I had to sign my name to prove that I was there. So X number of hours for ethics in medicine, X number of hours for HIPPA compliance, X number of hours for billing compliance and about two hours on sexual harassment. How many hours of disaster preparedness did I have? Zero. The disaster management plan was something that was circulated in an e-mail. It was not even a memo that you had to sign to prove that you had read it. So there was a medical disaster plan for medical personnel but it was not something where was a requirement to show proficiency.

Another element that was lesson-learned was that I was faced with people bearing weapons three times in the multi-day ordeal. There was never at any time in my medical training any preparation for how you cope with somebody bearing a weapon. That is something that is in the training of the police officers, airline personnel get that now and obviously military personnel do. Truly the times that my life was at risk were not related to the flood, fires, the food and water shortages, none of those were life threatening. The life threatening things were when I was faced with guns.

There was an instance when there was a prisoner with two armed prison guards in one of the wards. One of the guards left and the other one started unshackling the prisoner and nothing was explained to me. I did not know who the prisoner was or what he had done, and he was on high doses of steroid and I was concerned about his mental status. The armed guards were not communicating with me and one of the guards left for five hours to take a cigarette break on a day when our evacuation had to stop because of snipers, I had to ask one of the nurses to get him up. He was upset with me that I had no authority over him. He was so angry and he had a gun and he could use it. I had to get someone to come in and intervene and we had to apologize to each other. We also had people shooting at us when we were trying to evacuate. We did not know who they were. We assumed that they wanted to get into the hospital for food and shelter, or they were trying to get in to raid the pharmacy or just loot. We don't know. My husband and I were witnesses that they were shooting at doctors and nurses who were putting people into boats and also at helicopters that were coming in. These were not anticipated.

There is a lesson there for preparedness for everyone and, of course, for medical personnel. There has to be advanced planning and there has to be funding for plans to be implemented.

Shadi: Please tell us about the Nine-West Fund.

Dr. Berggren: Nine-West fund (named after the clinic's 9 West Ward at Charity Hospital ) was set up a few months after Katrina and we have raised about $19,000. A good part of that money has been spent by giving nurses and staff of the clinic grants of $1000 so that they could get their lives back together; it has paid for airfares for staff who had been forced to leave New Orleans to fly back. Now, we are using some of the funding by paying for various charges for patients' transportation.

To learn more about Dr. Berggren's ordeal at Charity Hospital, Read the "Unexpected Necessities:Inside Charity Hospital" published in the New England Journal of Medicine, October 13, 2005.

http://content.nejm.org/cgi/reprint/353/15/1550.pdf

To learn more about Dr. Berggren's work in Haiti

http://www.som.tulane.edu/march/index.html

http://www.som.tulane.edu/march/photo_presentation_htm#n.htm#

The Tulane-MARCH Haiti Initiative

The Infectious Disease faculties of Tulane University in New Orleans and a Haitian organization called MARCH (Management and Resources for Community Health) have entered into a cooperative relationship for the purpose of attacking the problem of AIDS in Haiti.

MARCH is a non-profit agency run by Dr. Antoine Augustin, a Haitian physician. With partial support from the Haitian Ministry of Health and a few non-governmental organizations, it provides health care to some 175,000 persons in villages surrounding Mirebalais, a town in Haiti 's rural central plateau. To fully meet the health needs of this population, MARCH depends on donations from the private sector, foundation grants, and corporations.

Tulane is represented by Drs. Ruth Berggren, Holly Murphy, and Susan McLellan, each an academic and clinical specialist in the field of AIDS.
Jana McDonald, MPH, also of Tulane, works in Mirebalais to monitor and evaluate the program which prevents HIV transmission from mothers to children.

The Tulane-MARCH group is engaged in a number of AIDS-related activities. It has received initial funding from the World AIDS Foundation and the American Society for Tropical Medicine and Hygiene for a program directed at the prevention of HIV transmission from mothers to children.

The activities of Tulane-MARCH include Voluntary Counseling and Testing for HIV among pregnant women and their partners, and provision of antiretroviral medications to HIV infected pregnant women and to any member of the population found to have AIDS. All HIV positive persons are linked to a special accompanying friend, called an “accompagnateur” whose role is to provide support, encouragement, and directly observed therapy (DOT).

Since its inception in June 2003, the Tulane-MARCH program has tested 10,950 pregnant women for HIV. 275 HIV infected persons and HIV exposed infants are in care, 103 babies have been born; only 3 with HIV in their blood. We employ rapid HIV tests, allowing us to bring HIV screening directly to rural communities via mobile clinics. Pregnant women have received these services enthusiastically, because they know we keep their test results confidential, and we offer antiretroviral therapy for free.