Walking where others fear to tread

AWARE interviews Glaxo's Scott Purdon and finds the human face of suffering

The proverbial light bulb went on over Scott Purdon's head inHanoi. As the global HIV Program Director for Glaxo Smith Kline (GSK), he has been in more Third World countries, visited more hospitals and seen more patients than most people will encounter in their entire lives. He carries a free pass from GSK every day of his professional life, allowing him to get as deep, dark and dirty as he needs.

Scott was in Hanoi, following up on GSK's work investigating the efficacy of antiretroviral treatments. That day he met a grandmother who was treating a seven-year-old girl. Both of the girl's parents had died from HIV/AIDS. In that small hut, Scott saw a girl lying on a sofa, the size of a three-year-old and carrying a fever for two months. Above all this, what stopped Scott in his tracks was the utter and complete apathy of the grandmother. She had fatalistically decided that the little girl would die just like her parents did. That's the way it worked in this part of the world.

What made it all so aggravating was the existence of a United States hospital just down the road, filled with free drugs that could treat her illness. The grandmother did not have the three dollars to take the bus to the clinic, so Scott and his team loaded the two of them into their truck and set off for the hospital. The brutal reality of AIDS in the field hit the GSK team in the face when the doctor refused to see the small girl. The training was there, the money was there, and funding was there. What wasn't there was a way to get over the doctor's prejudices about AIDS. The next day they took the two hour journey again to the hospital. The doctor told them that he was having lunch. Then he decided to take a nap. The next day the same thing happens again. The worst part of the experience was that he had seen it all before.

It didn't start this way for Scott Purdon. His background was in microbiology, which he studied in Aberdeen, Scotland. During his studies he came down to London for a six week stint at Chelsea Hospital, working with the early clinical trials for AIDS treatment. His quick assignment stretched into a two-year engagement. The lethalness of AIDS/HIV became obvious as each clinical cycle ended with the death of ten to twelve of the participants. The work made the impact quite personal and struck him deeply, leading him to join up with Glaxo Wellcome to work on clinical trials and novel therapeutics, including Glaxo Wellcome's early inhibitor products. Scott was unique in his group in that he had come from the public sector and had seen the personal side of the disease. He started to work with patient groups in Europe, conducting clinical trials investigating drug combinations designed to combat AIDS.

Although he enjoyed his work with the trials, he discovered that he enjoyed working with the patient groups more than the clinical trials themselves. When Glaxo Wellcome merged with Smith Kline, a new opportunity to work with global partners, community- based organizations and non-government organizations in underserved communities emerged. He made the move seven years ago and has never looked back.

The galvanizing moment was the decision by Glaxo to start a new community outreach program called Positive Action in 1992. At the time, Retrovir—the first drug approved in the United States for the treatment of HIV—had problems with pricing, problems with clinical trials, and all sorts of problems from activist organizations such as ACT UP New York. Glaxo started Positive Action to counter the current trend in which pharmaceutical groups over-managed their relationships with the organizations on the street. These street groups were frustrated over the lack of progress, seeing friends and neighbors die and not understanding why drugs were not getting to market faster. At first there seemed no way for these groups, clinical trials and pharmaceutical companies to work together. Every roadblock was met with derision and suspicion by the groups. Why couldn't there be expanded access to the trials? Why wasn't the protocol happening faster?

Positive Action was a chance for these groups to start to see and understand the hurdles that pharmaceutical companies had to overcome to bring their treatments to patients. Hurdles included 48-week clinical trial data requested from the FDA, there were multiple cycles for trials and then even more regulatory approval processes. At first there was lots of distrust on both sides. When activists and corporations got together in the same room it was usually chaos. It was always easy to politic against global companies, and most of the time the big pharma companies would just pack up and go home.

Positive Action was an attempt to put a face on the issues and not make it "them and us." Glaxo starting creating ways to work together with the FDA and governments. They started to understand the strengths and weaknesses of each player. The patient groups often had no structure to process the information from the field, while Glaxo had a lack of understanding on the street. The patient groups wanted to get medicine into people's hands quickly while pharma wanted to move slowly for fear of causing more harm than help. Slowly this clash of cultures evolved into a partnership. And as Retrovir moved closer to market, Glaxo found welcome partners.

It just so happens that the gay community was very well represented and knew what they were talking about when it ca me to AIDS and HIV. Their knowledge turned out to be vital to Glaxo to moving forward. Positive Action began to fund AIDS patient groupsto gain insight to patient issues, everything from dosage to lifestyle impact. GSK was one of the first to provide funding to three different global HIV organizations. Now, all three have a voice in the global discussion, and are considered peers with the United Nations and other international groups.

How did Glaxo pick the first organizations to work with? At the time there were very few HIV groups that had a global footprint, and were covering areas that were intimidating to many in political and corporate circles. This included everything from drugs to prostitution to homosexual sex. But, these groups also had some charismatic people at the helm who were articulate, bright and very good advocates. By applying Richard Berzinski's Global Fund's country coordinating mechanisms, GSK slowly started dragging these issues into the public political space.

Scott joined in 2001, nine years into the program. At the time, Positive Action had worked with key partners in developing countries, but focused its efforts on the United States and Europe. But the pandemic was starting to spread across the map from Asia to Eastern Europe, Africa and the Caribbean. Positive Action had to go global. They examined those partnerships, looked at what worked and what didn't, and applied the successes to new places. One of the first places Scott visited was in Trinidad. It was a big culture clash and the prototypical baptism of fire. Here he was, fresh off of the plane, sitting in a room full of activists, many of whom were HIV positive. He was representing a global pharmaceutical company in a part of the world that had limited access. The potential for getting shot down was remarkably high.

How do you deal with a situation when every bone in your body is telling you to run away? He did the only thing he could do: he listened to the room, seeking to understand the barriers and the frustrations. And when it was time for him to talk, he was honest. Although he didn't know the sector very well, he did know the clinical side. He offered to be their advocate within GSK to start helping and funding efforts to break new ground. Here Scott found his place in the system. Traditional donors often had a problem with many of the issues associated with AIDS and HIV. Challenging the misconceptions and all the dark sides of the disease was the aim, to strive to not have the restraints that other organizations had.

One goal was to build the early results that would bring in other donors. Glaxo saw Positive Action as a "starter" fund and also provided the technical skills that develop these groups faster, providing key resources in addition to much-needed money. This is what Positive Action really addresses: all the stigmas that have real impact on the street. They realized early on there needed to be hardship funds, slush funds, community funds, and most of all, education

In fact, education was at the core of the whole problem. Many people see the problem of HIV as a problem of access to drugs and money, but there are other barriers too. Activists groups tend to invest in the panacea of free drugs, but that is only part of the problem, and it often is spectacularly unhelpful on its own.

Scott quickly learned that meaningful progress does not happen in isolation. In these poverty-stricken regions, it was discovered that working with the local organizations, education triggered literacy, communication skills, and a capacity for these organizations to be able to treat other issues also. It became an opportunity to talk to community leaders about quality of life issues that could not be addressed previously.

One story from Scott's travels involves the Glaxo team's visit to a family in the field. Both parents were in their late 60s, still working, and both supporting four kids, all of whom were HIV positive. No one in the family had seen a doctor in three months. When they went to a funded center, they waited two days to be seen by a doctor. The family was charged for the two days they waited and ultimately sent home because the father's advanced HIV infection. Admittedly, the father appeared very ill, but the greater crime was that the medical staff's lack of compassion and education. No one would even allow him into the clinic. All the free drugs in the world were not going to save him. He was not only fighting a disease, he was also fighting generations of stigma, political leadership and government intransigence.

Another story from a corner of Africa: Across many parts of the continent the drugs are available, and much of the infrastructure and education is there. But the colonial hangovers set in as Scott listened to discussions the ability of Africans to take drugs on time. When he headed onto the streets of Kenya to find out if this urban legend was true, he found himself in the middle of a million-person slum. In the center was a clinic with the capacity to treat 1,000 people. But only 400 were being treated. Worse, there was no training, not enough needles for blood testing and not enough counselors. Even with these problems fixed, the community would not come in because it was the "HIV Clinic." Glaxo worked with a local partner to sponsor a three year project to see if they could link the clinic as an outreach organization instead of just a medical clinic. In 6 months they had over a 1,000 patients. By sensitizing the doctors to the personal issues and creating support groups, they created a voice for people who were not being treating. Now, once a month they sit down with the community to determine the issues that require addressing. For example, what language should they use in the clinical meetings, how to tell people to take a drug every day, how to describe the illnesses so they understand, how to engage people so they learn to help themselves? Now GSK and their community partners are packaging these programs and bringing them across Africa to empower more the communities.

Positive Action is functioning as a giant network of education, taking lessons learned in Europe and the United States and exporting that knowledge to Africa, and taking those results and sending them to Asia. In Thailand, Cambodia and China, they are now being approached with familiar questions. What is a support group? What is peer counseling? Many of the patients are suicidal, have no hope, and do not want to take the steps to begin healing themselves. Glaxo uses lessons learned half a world away to help them to push past the isolation. Medicine suddenly becomes personal, instead of a large clinic or a large company simply donating free drugs.

How can other companies get involved? Scott believes that the days of merely writing checks is over. Getting dirty with local partners is the only way to truly move the ball forward. Scott says it is essential to provide yourself and your partners with the tools to have robust monitoring so that tangible results can be seen. Many companies will argue that this costs too much, which Scott thinks is total rubbish. You need the accountability, and that means you need to know what is happening on the street.

Companies also have to understand the business benefit to achieve sustainability and maintain support from boards and investors. Realize that there are non-monetary benefits for your employees including pride, retention and happiness. The public perception of a company—locally and globally—is valuable too. Do you want to do good?

How can individuals get involved? If a company already has a community program running and you want to be part of that team, ask yourself "what credentials and experience do you possess to offer the team?" Simply wanting to help is not enough. Understand the objectives, your own skill set and what you can offer to the program. Many people want to save the world tomorrow, but sometimes it is better to volunteer locally to get some experience and exposure. Things always look different down on the street than in the hallways of a company. Local organizations are always crying out for help, and someone with business experience can be incredibly valuable to these organizations. Understand your skills and where to apply them. Logistics and planning may seem boring to you, but for a nonprofit, that is gold.

As Scott looks across all the countries and all the communities we has worked with, he realized that the great shift in his work was ceasing to "save" people and starting to "help" people. Philanthropy was not about correcting a situation as much as it was about empowering individuals to take control again of their own lives. And as much as he and his team have changed from the experience, so have the recipients of their work.

Working in India recently, they funded an HIV effort to support rural women. These women had contracted AIDS from drug use, and were ostracized by society because of their illness. Scott discovered that when they created a model that delivered support as well as medicine, these young women were becoming stronger about negotiating with their husbands and others about condoms. And that was empowering them to stand up for other things. They suddenly wanted the tools to bring more into their lives. And medical groups that previously would not treat these "druggies" were now looking at them differently. If understanding is about walking a mile in someone else's shoes, Scott Burdon has added a new part to that saying: And walk where others fear to tread.