“Activism will be needed to sustain gains.”

I’m at the Union Lung Conference in Kuala Lumpur, Malaysia and today I ran into Ken Castro, Assistant Surgeon General and Director of the Division of TB Elimination at the U.S. Center for Disease Control. Ken leads a team of experts devoted to eliminating TB in the US and around the world; but even more than that, he has a way of shifting the conversation in any room from talk to action. Ken gets things done.

Obviously, I dig that.

And things are getting done this week! I’ve had difficulty putting my finger on what it is exactly, but it feels different this year.

I asked Ken: Do you feel it? What do you think it is?

We’ve seen…a renewed sense of vibrancy in the community, at a time when decision-makers are more readily able to deliver and respond to those demands… There is a growing critical mass of affected individuals and communities who are speaking out… at the same time that new advances are promising to make a difference in the care of people with highly drug resistant forms of TB, both in terms of the ability to rapidly diagnose drug resistant TB and the ability to treat it with less toxic and more effective regimens…

What do you mean when you say decision-makers are now more able to respond to demands?

There are new drugs in the pipeline. The FDA will be convening on November 28th to evaluate the possibility of a new drug that can be used with people with multi-drug resistant TB. The last time a drug was evaluated in this way was the 1960s.

Why has it taken so long?

Lack of investment – disinvestment – in the necessary research. If I were to draw a parallel with HIV/AIDS, it was massive investment that attracted bright minds to research that led to the development of new ARVS [and other breakthroughs]. Now there is a package of care in the HIV community. We need to see that same type of directed investment into new tools for tuberculosis, but equally importantly, we need to translate these new tools into proper action and get drugs and tools to the people that need them.

So what’s your advice for ACTION and for other activists?

Activism will be needed to sustain gains. We must avoid the propensity for premature declarations of victory. This is a marathon which requires sustained action and sustained investment. HIV/AIDS will not be conquered by a one-time investment – but a sustained commitment to PEPFAR, to the Global Fund – something similar is justified and necessary for TB.  

Are you really an ‘activist at heart’?

I use my position to make a difference. I am cautious not to be too accepting of bureaucratic impediments – even if it means personal risk.

That’s difficult. What advice would you give others in a similar position?

In HIV there was a time when it was very uncomfortable. At the CDC, NIH and in other health departments activists threw red paint on people to symbolize the blood of those lost, the blood that was on them. It was not pretty – but it helped us break though. The compelling arguments prevailed at the end of the day.

Any of us who work for large institutions and agencies need to grow a thick skin – be welcome of criticism and understand that it is not personal – it is aimed at institutions. We have to avoid the propensity to be defensive, sort through the validity of the arguments and be welcoming of the outcomes that can come from uncomfortable episodes. And don’t lose sight of the individual when you are trying to develop policies to benefit the population.

I always ask myself. What is motivating this? How will this help the people we are trying to serve? We have to ask that whenever we are trying to formulate policy.

Why do you come to these conferences?

…It helps you connect with other people and keeps you from burning out and giving up. You realize, you are not a lone fighter, there are many others.

Later, Ken sent me a quotation from Dr. Bill Foege, an architect of smallpox eradication, which Ken believes underscores the need for a sustained and bold effort if we are to conquer TB: "Thousands of people participated in the global eradication effort...they were optimists...they were risk takers; there was no shortage of people telling them that the effort was futile... It wasn't science that threatened to stop us. It wasn't even nature per se. Rather, it was human nature..."

Ken reminded me how back in the early 90’s U.S. Senator Charles Schumer from New York stepped forward with new resources for tuberculosis.

We need to have something like that happen again…We need to do more now.