Access to ART? Good Luck.

4 06 2010

We know how to control HIV—we do it with antiretroviral therapy (ART). We’re so successful, an HIV infection is now a chronic condition rather than a death sentence . . . for some. For those with access to ART.

Before and after ART

But what about those without access? What about everybody else? As of the end of 2008, just 42 percent of those in lower- and middle-income countries were able to get these drugs.

Why is it so hard to provide this lifeline to those in need? A report put out in May 2010 by Médecins Sans Frontières (a.k.a. Doctors Without Borders), says it’s about the lack of infrastructure, particularly human resources, for the administration of treatment and care, including:

  • Inadequate salaries and poor working conditions, which lead to ‘brain drain,’ attrition, and an inability to attract new health workers
  • National policy barriers that block the possibility to shift tasks to lower level health staff
  • Lack of adequate national and international resources committed to address the health care worker crisis
  • Lack of donor funding for recurrent human resource costs, particularly salaries, due to concerns about “sustainability” and other constraints
  • Limits on spending from ministries of finance and international finance institutions, which can hinder governments’ ability to invest adequately in the health workforce

In addition to infrastructure, the AIDS charity AVERT suggests that barriers to universal access to treatment include:

  • A safe and sufficient supply chain of drugs
  • A life-long commitment on the part of patients to antiretroviral drugs (ARVs) and the ability of healthcare workers to help patients stick to the regimen
  • An awareness of the need for testing and treatment

This group goes on to explain that, “Focusing too heavily on treatment can also be problematic if it detracts too much from efforts to prevent new HIV infections, a scenario which would only add to the eventual treatment burden. Furthermore, unless treatment programmes focus on the vital tasks of monitoring and patient retention, many patients will eventually die from treatment failure.”

The real risk of reducing the work being done in prevention by focusing so much on treatment adds a troubling layer to the discussion.

So, there we are—the usual mountain of reasons why we can’t do what needs to be done. But, what’s a mountain? There are steps we as individuals can take to support universal access to ART:

  1. Press our politicians to stop backing off their commitment to help fund HIV/AIDS services in poorer countries.
  2. Find a reputable charity already in place and doing the work, then do a little fundraising of our own and give it to the charities doing the most good.
  3. Keep talking about these challenges, and if we haven’t been doing so, then start talking.  Silence isn’t an option, given the potential outcomes

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Share the Work to Reach the Goal

16 04 2010
A t-shirt advertising open source software.

Credit: Skype user “magerleagues"

If a piece of software or computer program is “open source,” that means that anybody can access the program’s code, make updates, and share it with others. Firefox is a well-known program that’s open source.

Nobody “owns” the program, and maintenance of these programs, which are usually free to consumers, is handled by a community of enthusiasts around the world.

Scientists, inspired by this hive-minded work style, have begun imitating the approach in their own research. Networked together by technology, researchers from around the world combine their efforts in pursuit of a common goal, as in the Human Genome Project and the Tropical Disease Initiative.

The Open Source Drug Discovery Foundation, a project spearheaded by India’s Council of Scientific and Industrial Research, is using this same approach to combat neglected diseases including malaria, leishmaniasis, and target number one―tuberculosis― which affect millions around the world.

The leaders of OSDD say that finding relief for people suffering from such diseases is up to them, because drug companies won’t put big money into this kind of research, since it would be difficult to recoup their investment.

So, how does it work? Members of the project donate their time and contribute their findings online. They hold discussions and pose questions. They share ideas. And it’s not just a group of established scientists—students are participating in the process as well. And everyone is focusing on a different aspect of the research: some are analyzing the genome of the bacteria that causes TB, while others might be researching existing patents for TB medicines.

Members are given credit for their contributions and are free to use the information in their own works and writings.

Project Director Zakir Thomas says that solving problems as a united group is “immensely motivational.” The fight against tuberculosis is a personal fight for many of the participants from India, where tuberculosis is a huge problem.

But, not everyone is sold on the project’s open source approach. Problems have appeared. How will the government provide the enormous amounts of money required to produce a drug and deliver it to the people who need it? Why would a company sponsor a clinical trial for a drug to which they would not have the rights? Many of the drug manufacturing companies in India specialize in producing generic drugs, not creating new ones.

Time will tell if India’s government will come through with the funding and a company will sponsor the clinical trials. If this process succeeds, it could fundamentally alter how scientists in the rest of the world research neglected diseases. And, who knows, perhaps all diseases.

Let’s hope it catches on.

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Patients’ Rights

10 08 2007

Although no parent can bear to think of their child being terminally ill, we know it does happen. When it happens, each of us wants the right to use any drug available to save our child.

The U.S. Court of Appeals for the District of Columbia Circuit decided that a terminally ill patient does not have a constitutional right to experimental drugs, even if those drugs could potentially save that patient.

In a dissent written by Judge Judith W. Rogers, she said that courts have established the right “to marry, to fornicate, to have children, to control the education and upbringing of children, to perform varied sexual acts in private, and to control one’s own body even if it results in one’s own death or the death of a fetus…but the right to try to save one’s life is left out in the cold despite its textual anchor in the right to life.”

Parents of terminally ill children should have access to experimental drugs that have undergone preliminary safety testing but are not yet FDA-approved. Period.