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Colorado Caps Insulin Co-Pay Costs at $100 a Month

The new law doesn't addressed those who have to pay list price for insulin, however.

Rep. Joe Kennedy III Says He Will No Longer Accept Money from Insulin Makers

In recent Congressional hearings on the insulin pricing crisis, lawmakers from both sides of the aisle have shown their frustration with executives from pharmaceutical companies and pharmacy benefit managers (PBM) on this issue. Few lawmakers were as pointed in their questioning, however, as Rep. Joe Kennedy III (D-MA).  

A member of the famous Kennedy family, Rep. Kennedy has made a name for himself all on his own by calling for the need to address widening economic inequality in the United States. As part of his focus on this issue, he regularly speaks out about issues of healthcare access, and the problems of insulin pricing in particular.

T1D Exchange Glu recently conducted a phone interview with Rep. Kennedy to discuss the insulin pricing crisis. During the course of the interview, we learned that while the congressman has taken money from insulin makers and at least one PBM in the past, he has decided no longer to do so.

You deal with many issues in a congressional session that are a matter of life and death. Why does this issue particularly resonate with you?

Because this issue is particularly egregious. Insulin is literally a drug upon which the lives of millions of people depend, and it is a drug that, at least one formulation, was discovered decades ago. The scientists recognized the power of insulin, and the widespread need for it, and they sold it not for gajillions of dollars, but for one dollar to a university to ensure everybody could get access to it.

We have now seen, because of the structure and the behavior of various entities in our healthcare system, Americans rationing their insulin, and sometimes dying because of it, because the cost of the drug is so high.

I live right outside of Boston, Massachusetts, one of the great centers of health care innovation in this world, and I’m all for innovation in health care. I want to make sure I keep those incentives for innovation in place, but those incentives do nothing if after creating those innovations, you do not allow patients who would benefit from them to access them.

When you look at the rising prices of insulin, there is often finger-pointing between PBMs, insurance, and pharmaceutical companies. Now that you had them testify, do you feel there is one area that deserves more scrutiny?

I think there’s, unfortunately, a lot of areas that need more scrutiny, and the big theme here is accountability. The PBMs are all saying it’s all pharma’s fault, and pharma is saying it’s all PBMs’ fault. And no one, no one is taking any accountability for it.

(At the hearing), I asked one of the executives from one of the pharmaceutical companies, “Look, fine, forget the finger-pointing. As a member of Congress, what are some levers I can address, that I can push and pull, to make sure that patients do not have to ration their insulin.” And the response that I got was, “Congress, pull us all together so we can have a discussion with meaningful reforms.”

(I said,) “Sir, where do you think you are? You are literally in Congress with a panel of lawmakers, with your pharmaceutical colleagues, with your PBM colleagues, and you were asked a question directly from a member of Congress, and you still refused to give an answer.”

There have been competing ideas about how to address this issue, including the Department of Health and Human Services proposal to encourage PBMs to pass rebates to the consumer at the point of sale. Some diabetes advocates, health care advocates, and some Democrats have been critical of that proposal. What’s your opinion on this idea?

Getting to the heart of that proposal, and the rebate world in general, the key to that is transparency. One of the challenges we’ve seen with PBM rebates is the lack of transparency to ensure that those PBMs are, in fact, passing that rebate onto the patient. When we try to get access to that information, they say, “Look, it’s proprietary, and it’s in a black box,” and no one actually gets to see it.

And so I think what that initiative tries to do is shine more transparency, but you end up in this space where there’s still some skepticism as to whether the rule itself will provide for the disclosure along the lines that’s necessary to really bring down the price.

That transparency has to be across the board. It has to be for the pharmaceutical companies, it has to be for the insurance companies, it has to be for the PBMs. You have to have that disinfectant of sunlight shine across the landscape here.

It seems like you’re favoring, or discussing, a systemic change rather than a proposal that touches on only one part of the problem.

I don’t think that there’s any doubt that there needs to be a systemic change here, period.

The bills that are working their way through our committee process, and have been on a broadly bipartisan basis, have looked at various aspects of insulin and the prescription drug space writ large. It’s trying to limit or outlaw various practices, such as blocking evergreening (of drug patents). It’s trying to examine and revitalize the generic marketplace to ensure that drugs can make that transition from a brand-name to a generic marketplace more effectively and easily, and not get subject to some of these additional procedures or mechanisms that pharmaceutical companies will engage in in order to effectively prolong their exclusivity.

And there are a whole series of bills, five or six of them, that attempt to do pieces of that, in a broadly bipartisan way, all of which are good, but the transparency piece I think has to be a bigger and broader issue.

Can you explain why there’s seemingly more momentum for action on this issue than in years past, at least since the time that you’ve been in office?

One, It’s a real priority, a stated priority, of the Democratic House. We ran on issues of health care cost, and wanted to bring health care costs down. One of the big drivers for cost increases is prescription drugs, and so we want to do this.

Republicans have had a different focus on health care costs, and that’s the repealing of the Affordable Care Act. You can make the system an awful lot cheaper if no one uses it.

Two, this is something the president has actually talked about, and there are early indications at this point that his administration is actually serious about doing this. If they are serious about doing it, then they will find a willing partner, and a number of Democrats to do so. And that push (for reform) has been extremely popular among the Republican base – it can be helpful to get some of these bills across the finish line.

The last piece is it has gotten to the point that it is so egregious. Over the course of the last four or five years, you’ve seen drastic price increases for no other reason than the companies can do it. At a certain point, even those who haven’t wanted to act to address this, you can’t…you can’t…there’s no justification for it.

Massachusetts ranks as the 4th-highest state in terms of the average amount of donations from the pharma industry to congressional legislators, according to a WBUR report. Does it worry you when you tackle this issue that you might be facing headwinds against affecting change because of the amount of money the pharmaceutical industry donates to politicians?

A couple of things. One, I’m worried about the overall campaign finance structure writ large. If I could wave a magic wand and solve two challenges, then campaign finance reform and nonpartisan redistricting would be the two things I would do. You gotta get the influence of money out of politics, and certainly the pharmaceutical industry is an extremely powerful one with an awful lot of money.

House Democrats, we said that this was going to be a priority for us. We just came back in power, and it’s one of our top priorities, and we’re moving these bills through in the first couple of months being here – despite the fact that we got an extremely large number of pharmaceutical companies based in Massachusetts.

I don’t think it’s solely the money issue that is derailing their ability to get this done. I think despite what we’ve heard from Republican colleagues for a while now, this just hasn’t been a priority of theirs for a series of reasons. And part of (their reluctance) gets back to the role of federal government in healthcare.

The whole value of PBMs, if you believe there is one, is the idea of bulk negotiation, right? “We have millions of customers, and we’re going to be buying millions of pills. If we’re going to be buying millions of pills, give us a discount because of volume.”

My Republican colleagues will say there’s a value there, and that it’s market-based incentives. Yet they limit Medicare from being able to do the same damn thing. And (they say) one of them is “government price-fixing and the other is “competitive bidding.”

Just because it’s government negotiating it, now all of the sudden it’s a bad thing, but if it’s private sector negotiating it for a for-profit, then that’s fine? I really hesitate to understand that difference.

According to data from Open Secrets, a website that tracks the influence of money in politics, you also took donations from Sanofi, Lilly, and Express Scripts during the 2017-2018 campaign cycle. Is there a need to not do that in the future or return that money, or is that just one of those facts of life being a Massachusetts congressional representative?

Great question. I think I stopped taking that money, I don’t know when we stopped taking it, I’ll double check on it. (Editor’s note: A staff member confirmed the next day that Congressman Kennedy is no longer accepting donations from insulin makers or PBMs.)

There are a number of different companies whose donations I’ve stopped taking money from for very real concerns of the way that the companies behave, and the way that they fall short on providing patients access to the pharmaceutical drugs that they need to be healthy or survive.

So 100 percent, I think that campaign finance is a real issue and needs to be addressed.

Thank you for your time.

Appreciate it. Absolutely. Thanks so much.

-Interview conducted by Craig Idlebrook

This interview has been condensed for length and for clarity.

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