Bay Windows - Local News, February 11, 1999
Brian Balthazar, Bay Windows correspondent

At the helm of those efforts is Executive Director Julie Marston, MPH and Research Director Calvin "Cal" J. Cohen, M.D., M.S.

As they reflect on CRI's 10-year history, they notice tremendous changes in practically all aspects of the disease. Part of their success is their ability to react immediately to those changes and keep searching.

"In the 10 years we have existed, clinical research, everything about AIDS, has changed dramatically," notes Marston. "And what we have always tried to do is turn on a dime. If one approach isn't working we move to the next, if that isn't working, we move to the next ... we have to follow how the needs are changing and how the environment is changing."

Being so immersed in the search, it may seem like light years ago that a small group of physicians, researchers, activists and people with HIV got together to talk about speeding up the pace of HIV research.

"Ten years ago we met in the back room of Club Cafe on a stormy December night," recalls Cohen. "We all had the same passion. We wanted to accelerate the pace of research. As much as what was being done at the time, it wasn't enough. There were more questions than were being answered."

And while questions still remain, so do a greater number of tools, studies and medications that have created hope for innumerable people. In keeping with CRI's mission to promote the rapid study and approval of new HIV-related therapies at their Boston clinic and satellite sites in Holyoke, and North Shore areas of Massachusetts, their care network has enrolled more than 600 people in clinical trials.

CRI also examines possible methods to make adhering to current drug regimens easier for patients-a task that can seem equally as daunting.

"There is certainly nothing desirable about taking these meds. This is not as simple as a shot in the arm and its done with," explains Cohen. "Launching a drug combination is like launching a space shuttle. Everything has got to be in place. You're trying to stop the virus from figuring it out. The virus has one mission, which is to win. This thing is always trying to mutate its genetic structure to ignore our drugs. It's very good at that. That is why we are in this mess."

While the initial launching of a treatment is crucial, maintaining a timely schedule of administering medications is also important.

"There are some meds that are forgiving, but there are other meds where the timing can matter a lot, where taking the pills an hour or two later could begin the undoings of the success of the medication."

This is a frightening prospect once you consider that once the virus "figures out" the drug, it is no longer an option.

"Once you take a drug and all the drugs related to that you blow your chances for all of those, so it is a profoundly important time for figuring out what you are doing," explains Marston.

The concept that failed drugs eliminated other drug options was learned the hard way. But, in keeping with their aggressive reaction to changes in the disease, they sprang forth with another important tool in their battle, education. By creating EdComp, their Educating Diverse Communities Program, they also offer drug adherence education, outreach, training, printed information and a speaker's bureau. On the clinical side, they are developing a study to examine an individual's virus "profile," thus determining what kind of effect a particular drug will have on a patient before it is administered directly.

Patient feedback has proven to be a great source of information for Cohen's research. In addition to CRI's clinical trials locally, he provides professional answers to HIV and AIDS related inquiries on www. thebody.com Website.

"The number of hits it receives is remarkable. It allows me to keep my ear to the ground -to know what the questions are internationally."

Of course, all the research and feedback does little good if the drugs are inaccessible. Through CRI's HIV Drug Assistance Plan, (HDAP), those under or uninsured are provided access to more than 32 HIV drugs. Since the program's inception it has served 8,000 people.

Naturally, the programs don't fund themselves. Marston notes that Massachusetts is remarkably ahead in their programs than many other states. In additional to grants and other sources, Massachusetts residents that donate money to AIDS research on their income tax form are supporting CRI. Most recently, Governor Cellucci announced that he was earmarking a portion of the tobacco settlement towards AIDS research.

"We have unbelievably progressive people at the Massachusetts Department of Public Health and our legislature and governor have been enormously supportive. It is remarkable what the leadership has been like in this state. And people who have HIV have benefited enormously," says Marston.

It would seem that after ten years, many of their original goals have been achieved. They have accelerated the study of HIV and AIDS. They offer clinical support that even the major teaching hospitals have not been able to offer. The search is far from over.

"There is nothing simple about this virus at all and sometimes the way the media characterizes it is misleading," says Marston.

"Treatment is improving and advancing," notes Cohen. "While there are problems, on the other hand, there are also improvements and a lot of the people who you might assume are not on anything or are negative are actually well because they are on the right medicine.

"We need to make sure that people know that if they are at a point where they have just tested positive and they don't know their treatment options, or their current treatment isn't working, we are a resource that people should know about.

"We will know when our work has been successful when we are out of business Our job is to make it so that no one would need any more research. That every drug would do what it needs to do ... Our job is not to be part of the never-ending saga of HIV but to be part of the ending saga.

"Ten years ago nobody had a clue what the tools would be to end this and now we actually have some clues ... we have some clues and we are pursuing them aggressively ... Not too long ago one of the San Francisco newspapers actually had a headline "No Obituaries' because it was the first week in their ten-year history they finally had a week worth of no HIV obituaries for the first time. That is what we're trying to do."
990211
BY990203

Always watch for outdated information. This article first appeared in 1999. This material is designed to support, not replace, the relationship that exists between you and your doctor.

AEGiS presents published material, reprinted with permission and neither endorses nor opposes any material. All information contained on this website, including information relating to health conditions, products, and treatments, is for informational purposes only. It is often presented in summary or aggregate form. It is not meant to be a substitute for the advice provided by your own physician or other medical professionals. Always discuss treatment options with a doctor who specializes in treating HIV.

Copyright ©1980, 1999. AEGiS. All materials appearing on AEGiS are protected by copyright as a collective work or compilation under U.S. copyright and other laws and are the property of AEGiS, or the party credited as the provider of the content. .