Royal Honour for Ineke van der Ende

Ineke van der Ende, infectious disease specialist at Erasmus Medical Centre, received a Royal Honour on 26 April in Rotterdam when she became Knight of the Order of OranjeIneke van der Ende Nassau. We spoke with Dr. van der Ende about her extensive work in the field of HIV that has led to her receiving this knighthood.

Could you please explain when and how you came to be involved in the field of HIV?

It really started in 1984, before HIV was even known. I was involved in research in haemophilia patients, looking into why CD4 cell levels were decreasing in these patients. This involved meeting with patients every 3 months and asking them and their partners a range of questions including medically-related questions such as when had they last received Factor 8, but also behavioural questions such as how often did they have sex. When HIV was discovered and pinpointed as one of the main causes of decreasing CD4 cell counts, we found that a large number of the haemophilia patients were HIV positive. We also found that homosexual partners were often HIV positive, but not female partners indicating that HIV was more easily transmitted through homosexual rather than heterosexual contact.

The first non-haemophiliac patient I saw was an MSM (men who have sex with men) that presented with hepatitis C but was then also diagnosed with HIV. And because I was one of the few doctors that had any experience with HIV following cases of HIV were referred through to me.

How has your work changed over the years, especially since the introduction of cART?

In the early days of HIV it was a matter of monitoring CD4 cell counts, managing AIDS and opportunistic infections, and then comforting the dying. In those days I was involved a lot in educating all types of people about HIV to try to improve understanding about the disease. Since therapy has become available my work has changed quite considerably. I now focus on making sure that people are adhering to their therapy and on conditions related to ageing, such as diabetes and osteoporosis. And it’s much more business-like nowadays with more attention to costs, guidelines and accreditation. HIV is now relatively easy to treat, perhaps more so than something like diabetes which often has more complications.

What are your main areas of interest?

I have a broad range of interest, from HIV and hepatitis B or C co-infections to late presenters (people presenting to care late in their HIV infection, Ed.). In relation to late presenters, I’d like to see the stigma surrounding HIV testing removed and the introduction of annual HIV testing for people from endemic areas in a normal GP situation. This would increase the chances of diagnosing HIV in people from these areas before they become late presenters. I’m also interested in trying to reduce the numbers of people that become lost to follow-up. A large number of people infected with HIV have psychiatric problems and they need extra support to keep them on therapy so that they don’t become lost to follow-up. Another area of interest is mother-to-child-transmission and side effects of therapy in both mother and child. Also, the increasing number of patients living with HIV allows more opportunities for research and I am currently involved in assisting students in carrying out HIV-related research.

What do you see as areas of progress over the coming years in relation to HIV?

I think the studies that are looking at a cure for HIV are very interesting. This involves looking at people with long-term undetectable HIV and then clearing the latent reservoirs of the virus. (Latent reservoirs of HIV are located throughout the body, including the brain, lymphoid tissue, bone marrow and the genital tract. These reservoirs persist even when an HIV-infected patient is treated with antiretroviral therapy. Ed.) Other areas include a therapeutic vaccine and studying the long-term side effects of antiretroviral therapy.

Some of the patients you treat are infected with HIV-2. Can you explain the challenges in treating these patients?

There are good and bad sides to being infected with HIV-2. The good thing is that around 50% of people with HIV-2 infection are long-term non-progressive. That is, their CD4 cell count remains fairly normal and they don’t develop AIDS. Unfortunately, for the 50% of cases that do follow a normal course of infection, antiretroviral therapy doesn’t work very well, so there is a greater risk of developing AIDS and potentially dying from the HIV infection. However, the incidence and prevalence of HIV is declining so that there are only a very small number of people infected with HIV-2 worldwide.

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Stichting HIV Monitoring

Stichting HIV Monitoring (SHM) makes an essential contribution to healthcare for HIV-positive people in the Netherlands. Working with all recognised HIV treatment centres in the Netherlands, SHM systematically collects coded medical data from all registered HIV patients. SHM uses these data to produce centre-specific reports that allow HIV treatment centres to optimise their patient care and obtain formal certification. SHM’s data also form the basis for the yearly HIV monitoring report and are used in HIV-related research in the Netherlands and internationally. The outcome of SHM’s research provides tangible input into HIV care and prevention polices in the Netherlands.

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