The Community Research Initiative of New England offers unique insights into ongoing developments in the field of HIV and AIDS. But perhaps more importantly, CRI calls special attention to the personal needs of every individual patient.
CRI has been addressing the needs of people infected with HIV and AIDS, through both treatment and research, for 15 years. CRI’s Springfield office, known as CRI West, has been active for five of those years, establishing an important foothold in the Western Mass. community.
CRI, founded in Boston, specializes in the research of new medicines, new uses for existing drugs and new drug combinations, and the treatment of HIV-positive patients and those living with AIDS and AIDS-related disorders. Since its inception, CRI has also become one of the lead organizations in the state administering the HIV Drug Assistance Program (HDAP), along with the Massachusetts Department of Public Health.
Each of the Commonwealth’s three CRI locations – the flagship office remains in Boston, and the most recent addition to the network is in Provincetown – have different foci and offer different services, in order to best cater to the immediate population the offices serve.
Dr. Anne Morris, a specialist in HIV and infectious diseases, has headed CRI West since it opened its doors in 1999, but has worked with HIV-positive patients in the area for nearly two decades. She said Greater Springfield not only has some of the highest rates of HIV infection in the state, but a very unique population as well, which, in a very short time, has placed CRI West on the frontlines of current HIV research.
“The HIV demographics in this area are vastly different from anywhere else,” Morris said, explaining that half of the patients CRI West serves are women, the fastest growing group of HIV positive people in the world, and nearly half are Latino, one of the region’s largest ethnic groups.
The wide range of cultures and socio-economic backgrounds in Western Mass. also offers a snap shot of the impact of HIV and AIDS on the global community, however, and reminds Morris and her colleagues, Drs. Donnie McGrath and Claudia Martorell, Nurse Practitioner Susan Cournoyer, and a 10-person nursing and support staff, of the importance of underscoring compassion as a key part of their field.
The social impact of HIV and AIDS can be readily observed in CRI’s patients, Morris said. The stigma associated with the disease, the common misconceptions, and the gradual shifts in both the evolution of the disease itself and the people it impacts are of constant concern when treating those infected, and when studying the virus and its migrations. Women over 50 comprise one of the groups with rising rates of HIV, for instance, and the virus is being recorded more often in rural, versus urban, areas.
The research, counseling, and treatment services CRI West provides also draw further attention to the unique overlap between patient care and research that CRI staff sees in the field of HIV care every day.
“What is happening in this area is closer to what is happening internationally than in other areas,” added McGrath, who only recently joined the CRI team after working with HIV and AIDS treatment and research in South Africa. “Also, when working in a community such as this, you can more readily get feedback on how it impacts people’s lives. A lot of the stigma, denial, and confusion about what HIV is mirrors what you will see in other countries.”
Across the United States, there is more of a tendency for people with HIV to be more impacted by their personal diagnosis, and to blame themselves,” he continued. “But in Springfield and the surrounding area, there is more of a mixed picture.”
Those variables have put CRI West in a position to work with some of the most underserved HIV and AIDS patients in the state, in terms of both treatment and education, with the newest drugs and drug combinations or within clinical trials, and to cull internationally relevant findings from the research and treatments conducted at the CRI center on Chestnut Street.
“The ability to conduct clinical trials gives us expanded access to drugs and treatments that we otherwise would not have,” Morris said. “We are one of the only places in the state where people can gain access to drugs that have yet to be approved.
|“We are one of the only places in the state where people can gain access to drugs that have yet to be approved. When you don’t have research, your treatment options are much more limited.”|
“For a long time, there was no HIV research in Springfield,” she continued. “When you don’t have research, your treatment options are much more limited.”
Further, drug trials can benefit patients that have begun to develop tolerances for treatments, and the availability of new drugs and drug combinations directly applies to the ongoing concern of quality of life. HIV research is now moving in the direction of reducing the number of pills and other drugs an HIV-positive person must take each day, Morris said, with the eventual goal of getting some patients to the point at which they can take just one pill a day, or be able to take one-or two-day breaks in the daily treatment regimen.
“That will reduce the toxicity of the drugs within the body, and also psychologically benefit people,” she said.
A laminated sheet given to HIV patients to help them identify the many drugs they must take on a daily basis, often including more than 40 doses a day, offers the best glance at the breadth of CRI’s research – of the 23 different drugs depicted on the current chart, CRI West has been involved in a leg of research or a clinical trial with all of them.
In fact, CRI West has been involved with one of the most important HIV studies today – that of pregnancy in HIV-positive women. Morris’ work has been internationally recognized and incorporated into ongoing studies of HIV-positive pregnancies, and also benefits the local population she treats.
“We have always seen a lot of pregnancies, and that has not really changed recently,” she explained. “The biggest difference now is that we are seeing more and more elective pregnancies.”
Morris said that as research continues to progress and new HIV drugs are released and fine-tuned, more women—more patients in general – are looking at their condition as a chronic disease that does not necessarily bar them from starting a family.
She added that treatment of pregnant women living with HIV does not differ much from treatment of other patients, save for a few drugs that must be eliminated from the normal treatment rotation because they might be harmful to the child. The major change, she said, is in the attention to the very short time frame in which a pregnancy must be effectively treated to safeguard against transmission to the child.
“Nine months is an intense and very short amount of time to most effectively treat a woman with the goal of a safe pregnancy,” Morris said. “Medication must be given at particular points in time, and one of the most dangerous times is the actual delivery.”
In addition to the important research hurdles CRI West’s work has cleared in major areas such as pregnancy, Morris said she also sees new attitudes toward HIV and AIDS taking hold worldwide and locally, due in part to the increasing ability to stave off HIV symptoms. Counseling, though, remains an intrinsic part of every new venture that CRI takes on, and the center’s staff does not predict that portion of its field will change in the midst of constant medical advancements.
“Even as drugs and treatments improve, there are always new challenges,” Morris said. “People are living longer with the disease than ever before, so that alone is something new we need to pay attention to.
“One of the biggest challenges facing HIV-positive patients is still the stigma attached to the disease. It worsens in smaller communities, and this area’s communities are particularly tight-knit,” Morris concluded. “This field is one of constant education, and striving to maximize quality of life. Whether seeing patients or researching new developments, that’s just what HIV care is.”