Diane Blum, Part 2: Health care reform and the financial impact of cancer

Kathleen Sebelius, new secretary of Health and Human Services, and Nancy-Ann DeParle, new head of the White House Office For Health Reform

Kathleen Sebelius, new secretary of Health and Human Services, and Nancy-Ann DeParle, new head of the White House Office For Health Reform

Here is part 2 of an interview with Diane Blum, executive director of CancerCare in New York.

Q. What are your views of health care reform? What would you like to see done?
A. Policy is not my expertise, my expertise is really in directing an organization that provides service. I unequivocally understand, as do all of my colleagues here, that we have to address this issue of health care from the point of view of cancer, which is really the only thing I have expertise in. You’re going to have more people getting cancer, because cancer is a disease of people as they age, and we have an aging population. You’re going to have more people living longer, which is definitely a plus, but the window of need extends. And you also are curing more people who have all of these post-treatment issues which need to be addressed.

ccQ. What kind of post-treatment psychosocial needs do you see coming to the fore?
A. Well, from the psychosocial point of view you certainly have the issues of how people are coping after a diagnosis of cancer. It isn’t just a matter of waiting for your counts to come back, it takes awhile to rebound emotionally, financially and socially from a diagnosis of cancer. There are many people who have great anxiety when they are in treatment and who might have changed their roles in their family and are now expected to go back to what their previous role was. There are people who want to switch jobs who wonder how much to disclose about a cancer diagnosis, there are people who are embarking on new relationships. The good news is that people are finishing treament and hopefully going to do well. The bad news is that these are real issues that we know now need attention.

You also have all the societal issues. Yes, you must be able to get health care but a lot of people have to buy it at a price they can’t afford. People who have had cancer can’t get life insurance. There are all of these very kinds of practical issues that we didn’t think about a whole lot 20 years ago because your only goal was getting somebody to finish their treatment and ideally be cured. Now that there is a larger number of people in that group, we really have to pay attention to that. But all of these things are going to add to cost, there is no question of that.

We have incredible access to information. People are really encouraged to be more participatory, to learn more. So you have a lot of interest from people in more interventions and different kinds of tests. It is not sustainable. So something has to give. I don’t think that expensive cancer drugs are going to be the first thing that is going to be dealt with. Again, from a societal point of view, we have moved already to provide more health insurance to children. I think they’ll probably be addressing the needs of the uninsured. I think there might be some expansion of Medicare to a younger age if people lose their work. I don’t think expensive cancer drugs are going to be number one on the list.

I think we’re going to see more pressure to use those drugs in a more effective way. There is $1 billion in the stimulus bill for comparative effectiveness study. They’re not easy to do, but I’m going to a meeting at the end of April on comparative effectiveness, and all of a sudden there is all this talk about comparative effectiveness.

If you take the long view, these things all have some impact as we move forward, but I would say that the system as it stands is not sustainable from a consumer point of view, from an employer point of view, from an insurer point of view, something has to give. How is that going to happen? What is it going to take? What is the outcome going to be?

Q. You have funding available for young people 18 and under. Young survivors are very frustrated that there is so little for them.
A. It’s not to have cancer at any age. But if you are 50 or 60 or 70, you have more of a peer group who has cancer. You have more life experience, you’re at a different point in your life. For young adults it is very isolating. It is very difficult. They are at a point in their lives where so much can be interrupted. Their career choice, their social choices, their school choice. We have a social worker who does some wonderful programming.

Q. Any final points that you’d like to stress?
A. I feel good that for years we have been talking about the financial impact of cancer and we have been trying to address it. And now it is being recognized much more widely. Not that that makes the impact any less, but it is gratifying to think that we have addressed this when many people were not paying much attention to it. I’m sorry it took a crisis to get there.

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