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 As severe asthma sufferers, we are the ones directly affected by the decisions made by this committee.

Letter to
Severe Asthma Research Program Steering Committee, NIH Dr Robert Smith
Severe Asthma Research Program Steering Committee Sally Wenzel, MD
Severe Asthma Research Program Steering Committee Virginia Taggert, NHLBI
and 1 other
NHLBI and National Institutes of Health (NIH) William Busse MD
As citizens who vote, former and current research patients, and people who suffer from severe asthma, we are writing about an issue that is very important to us: Engaging severe asthma patients in the process of determining how medical research funding is approved for clinical trials.

The research that the NIH/NHLBI approves for severe asthma is key to making much needed progress in treating this devastating disease and to eventually finding a cure. Currently, less severe forms of asthma are often controlled by traditional treatments. This is not the case with severe asthma, many sufferers of which are never able to breathe normally or exhale completely. Over time, airways can become narrow and often lose their elasticity and become permanently scarred– leading to a constant feeling of suffocation that, at best, is only minimally and temporarily relieved with steroids or bronchodilators. (Continued steroid use and withdrawal is, in itself, fraught with devastating physical and emotional complications.) Daily life is a struggle. Hospitalizations are frequent, and often require stays in the ICU and intubation. Current treatment options are so limited that exacerbations for severe asthmatics are often life-threatening. New asthma therapies are desperately needed for severe asthmatics whose conditions are poorly controlled by standard medications.

Determining how severe asthma is different from standard asthma is the key to new treatments.
Yet, patients who are generally very knowledgeable about their disease and the consequences of available treatments currently have no advisory capacity on NHLBI boards when research dollars are being considered for severe asthma. Is there not a process where those most affected can share the risk and benefit of treatment development?

We believe that having patients, companies, doctors, researchers in the same room makes all parties more likely to make real progress in the treatment of severe asthma. History supports having ALL stakeholders at the table. Consider the HIV epidemic thirty years ago, when the drug companies, the NIH, and the FDA, brought together by the patients, worked together to significantly advance research and treatment with appropriate risk and benefit. We advocate instituting this successful practice for severe asthma research.

NIH budgeting for research into severe asthma has greatly advanced our understanding of this form of the disease. However, more funding for research and improved treatments is vital. As citizens who vote, who suffer, and who care, we urge you to bring patients into the process of considering approaches and priorities to expedite the understanding and successful treatment of this devastating disease.

Most sincerely,

Sheila Brillhart
Stephen Gaudet

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