Valerie Chang grew up with mild, intermittent asthma, and at age 42, she was also diagnosed with moderate to severe emphysema, a form of chronic obstructive pulmonary disease (COPD). Individuals with COPD have inflamed and thickened airways. The tissue where oxygen is exchanged becomes destroyed and the flow of air in and out of the lungs decreases, resulting in decreased oxygen into tissues. Currently, there is no cure for COPD, and it is the third leading cause of death by disease in the United States.¹ While searching for the best possible treatment for her lung condition, Valerie says she met a lot of wonderful people including healthcare providers, researchers, fellow patients, and even individuals who make and sell medications and devices for lung disease patients.

Valerie has previously worked as a practicing attorney, a special education hearing officer, and a district court judge. Now she is involved with many advocacy organizations in various capacities. In 2007, she founded the Hawaii COPD Coalition, where she currently serves as the executive director. Valerie has also had multiple roles at the U.S. COPD Coalition; she has been an officer since 2014 and now serves as the vice-chair. In addition to her work with these coalitions, she serves on the Special Interest Group of the American College of Chest Physicians in both Supplemental Oxygen and Integrative Medicine and on the advocacy committee for the Coalition for Tobacco Free Hawaii. Additionally, Valerie participates and speaks as a patient advocate for the American Association of Respiratory Care (AARC). Valerie asserts that she is “very excited about the progress that is being made on new and better treatments, as well as treatments for infections and other things that plague folks with lung disease and the general population. Those involved in research are very open to sharing information about what they know and have learned as well as what new directions and interests they are pursuing.”

In 2014, Valerie was nominated by AARC to serve as a consumer advocate for the Congressionally Directed Medical Research Programs (CDMRP) Peer Reviewed Medical Research Program (PRMRP) peer review panel. Consumer reviewers are an integral part of the CDMRP two-tier review process and offer a unique and important viewpoint for funding the most impactful research. Valerie notes that she has been impressed with the caliber of people she has met over the years while participating as a consumer reviewer for the PRMRP. Valerie believes that the patient and consumer voice has an essential impact on the research being funded, making it more relevant to a wider group of people. She also notes that scientists are able to adjust their research plans in order to reduce the dropout rate of participants in their studies and to ensure what is being asked of patients is truly helpful. Throughout Valerie’s involvement with the PRMRP, she has been encouraged by the different approaches researchers take to address respiratory health conditions and problems. According to Valerie, “Consumer advocates have a lot to gain and contribute to the research community, by sharing their insights as to which proposals will improve lives of people with the conditions that are being targeted. Their suggestions are valued and they can learn more about the research process and meet researchers and learn more about how research proposals are evaluated in determining which ones are funded. It is very fulfilling to participate as a consumer advocate in research panels.” When Valerie is not busy advocating for respiratory health, she enjoys traveling and dining out, and she hopes to return to these activities once the COVID-19 pandemic ends.

Reference:

¹ https://www.lung.org/lung-health-diseases/lung-disease-lookup/copd/learn-about-copd