The National Health Council is an organization dedicated to bringing together all segments of the health care community in effort to provide a united voice for people with chronic diseases and disabilities and their family caregivers. It is made up of more than 100 national health-related organizations, including 50 of the nation’s leading patient advocacy groups.

Nancy Hughes is the Director of Communications and Marketing at the National Health Council. I talked with Nancy about the goals and accomplishments of the National Health Council as well as couple of recent health issues in the news. As she was once a reporter on radio and television, she was very forgiving and helpful in what was the first interview I had ever conducted. I received some very good responses including information and opinions about the newly proposed health care bill, biologics, and the National Health Council.

Physician.com : Hi Nancy! Let’s get right down to business. In a perfect world, or the United States in this case, what would health care look like?

Nancy Hughes: That’s a very good question Tim. Both the House and Senate have legislation that is currently being revised. At the National Health Center, we believe in five core principles to health care: First, we believe that health care should cover everyone. Second, we believe that health care should aim to curb its costs responsibly. Third, we believe that health care should abolish exclusions of pre-existing conditions. Fourth, we believe that health care should eliminate lifetime caps that limit a specified level of the total benefit a health plan will pay. Lastly, we believe that health care should ensure access to long-term and end-of-life care.

P: Hopefully the new legislation will cover some of those principles. Moving on, what is the goal of the National Health Council?

N: At the National Health Council, our mission is to provide a united voice for the more than 133 million people with chronic conditions and disabilities and their family caregivers.

P: What are some of the bigger accomplishments of the National Health Council in the past year?

N: I would have to say that our [biggest] accomplishment has been providing that united voice. We have spent a lot of time working with members of Congress on health care reform legislation and the new administration. All five of the aforementioned new principles are covered in the main pieces of legislation that are currently being debated. I believe that getting Congress to include these five principles was a major accomplishment.

P: Please give an example of how the National Health Council advocates for patients.

N: We meet on the Hill with members of Congress and meet with administration to advocate for patients. Additionally, we meet the representatives of patient organizations and get together to have a dialogue on how best to present the issues that affect people with chronic conditions in setting policy and changing the laws on a national, federal level. We do this through offering testimony and drafting legislation — which we then share with Congress for their consideration.

P: Let’s dive into some more recent health news. What do you think about the newly proposed health care bill by the House Democrats?

N: The new bill does include a lot of good elements that we at the National Health Council support. For example, it does cut costs and abolish exclusions for pre-existing conditions. We are still studying it — it is a long bill [laughs]. We are still in the process of reviewing it.

P: Yes, I have heard rumors of its heaviness. How about biotechnology drugs? Generic drugs have been estimated to save $734 billion in the last decade alone. Biotechnology drugs, or biologics, are widely regarded as the future of medicine and the pharmaceutical industry. How long do you believe the length of exclusivity should be for these biologics?

N: Well, there are a number of different opinions regarding the length of exclusivity — should it be 5, 7, 10, 12 years? The National Health Council conducted patient focus groups, national in scope, asking patients about what they thought about exclusivity periods. The consensus was that there should be incentive for a company to do the research, but [how long] should the period be? There are a number of different opinions. We’ve done research dealing with the legislation — the consensus is 10 years, which is the international standard. We believe that there should be an added twist. The National Health Council believes that the legislation should include additional incentive for the companies that address conditions that do not currently have a cure — Alzheimer’s, for example. We don’t think it’s just about the exclusivity period; legislation should include additional incentives for areas such as pediatrics which do not garner the attention that other diseases do.

P: I agree, but what about affordability? Biologics may be revolutionary, but they are very expensive. Do you believe that lowering the length of exclusivity can increase competition, or provide incentive as you said, enough to make biologics substantially more affordable?

N: They are very expensive. You make a very good point here — that is, how do you balance cost verses availability? There are differences of opinion on this issue. Based on research that we did, our recommendation is 10 years. Now, that’s not a hard and fast time frame, just a recommendation. There needs to be continued dialogue about the cost and availability of these drugs to give the incentives that any company would have. It is important for patients to have affordable biologics, especially those that hold a treatment that most communities don’t have access to.

P: I don’t want to take up too much of your time, so I’ll leave you with this. What can the common person do to help the National Health Council with its goals?

N: Well thank you for asking! We have a website called PuttingPatientsFirst.net that includes the five principles and a detailed explanation about each of them. We are encouraging people to find and sign the petition to support the five principles and putting patients first.

You can find the petition on the NHC website here. Also, click here to download The National Health Council’s Five Health Care Principles for Putting Patients First.