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This Patient Advocate Has No Quarrel With Big Pharma

Liz Helms, president and CEO of the California Chronic Care Coalition, sits at her desk in her Sacramento, Calif., office. Helms’ group receives money from pharmaceutical companies, and she says she wouldn’t support policy that would hinder the industry’s ability to develop new treatments. (Pauline Bartolone/California Healthline)

When it comes to the high price of prescription drugs — and government efforts to rein them in — Liz Helms wants everyone to “put their knives down and come to the table.”

The president and CEO of the California Chronic Care Coalition, a group of 30 patient organizations that includes the American Diabetes Association and Epilepsy California, says she wants to find “solutions to end the prescription drug wars.”

Helms has been skeptical of some controversial California proposals to control prescription drug costs — including a now-shelved bill that would have required drugmakers to notify state officials of drug price increases in advance. For Helms, the measure’s failure is an opportunity to steer the drug price conversation in a different direction.

Helms is an energetic voice for patients in Sacramento’s halls of power. But her coalition receives contributions from pharmaceutical companies in addition to foundation grants and funding from other sources.

The consumer advocacy group Public Citizen cited the Coalition in a report that said pharmaceutical funding makes patient groups more sympathetic to industry positions.

Helms says the group has received pharmaceutical funding for many years and that the money does not affect its priorities. If her coalition falls in line with a funder on a policy priority, it’s “not because they’ve influenced us to agree with them.”

A self-described Republican and capitalist, Helms says she does not want to single out an industry that improves people’s lives and can help reduce medical costs over the long term. She would rather look at instances in which health care dollars are wasted, such as when patients don’t get the right medication at the right time.

This interview has been edited for length and clarity.

Q: Do you think the rising cost of prescription drugs is a problem that should be addressed by the government?

You know, I don’t want government to run everything. When the government gets involved at such a level where they want to [introduce] price controls, it could hamper the development of new medicines. That would be my worry.

If there’s legislation, it’s got to be thoughtful. It can’t be finger-pointing and angry people saying, “this is too much and we hate you” — villainizing the one industry that does the most work to save people’s lives.

When we can have…decent conversations, we will get to a better place. And asking why drug costs are so high, I don’t have an answer for that.

Q: Many states have considered measures this year to shine a light on the cost of drugs. Do you think more transparency would better inform the conversation about managing prices?

I think transparency is important in health care. We’ve been pushing for disclosure for 20 years on all sorts of levels. The pharmaceutical industry is different because there’s so many players. I don’t know how you get [price] information, you know? All we care about is…can people afford their meds? What are their barriers? That’s the world in which we live. And I think that the health plans and the pharmaceutical industry need to do a better job of getting together and working through some of the issues.

Q: What is your position on the California Drug Price Relief Act — the November ballot measure that would limit drug prices to no more than what the U.S. Department of Veterans Affairs pays?

We’re opposed for a number of reasons. First of all, we don’t think they can actually do what they’re asking to do in that ballot initiative. [Our members] don’t agree with the group [AIDS Healthcare Foundation] that put this proposition out, and we don’t believe that even they can legally do what it says to do.

Q: What about the principle of the measure? The proposal that California shouldn’t pay more than what the VA pays for drugs? Do you agree with that?

We don’t even know what California pays. They’re not disclosing what they’re paying for the drugs. The VA’s not disclosing what they’re paying for the drugs. We just don’t see this being a good proposition.

Q: It sounds like you take issue with the bill’s technical aspects and whether it can be implemented legally. If it were clear that it could be done legally, would you support it?

I don’t want anything that would hamper innovation and research. So anything that would do that, we would oppose.

Q: Californians might be surprised a patient advocacy group opposes measures to regulate the pharmaceutical industry. How would you respond to that?

We just think there’s a better way [to cut costs] that doesn’t hurt innovation, that doesn’t hurt research.

Q: The California Life Sciences Association, an industry group, recently joined your organization. Why?  

We recruited them. They didn’t come to us. We wanted to look at ways to have deeper discussions by bringing more stakeholders to the table. We felt that, once we started having conversations with them, we were very like-minded.

We don’t mind stirring the pot and having different kinds of discussions. They only get one vote. We still have all of our other members.

Q: Could bringing an industry group on board compromise your advocacy and make you more likely to support industry than patients?

Not going to happen. We stay with our mission 100 percent of the time and that’s why we have a mission statement, a board, a steering committee, a policy committee. It’s all of us coming to consensus, not one person making a decision.

Q: How do you propose to bring everyone to the table to address drug prices and engage in a discussion about whether they should be regulated?

It’s the patients that are going to be able to bring the people together because that’s what this is all about. It’s for the betterment of society and getting each individual the kind of care they need so they can live a quality life.

And when everybody’s fighting with each other, we get put in the middle of it and nobody wins. And the biggest loser is the patient.

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