Soooooooooo I listened to the The Oversight and Investigations Subcommittee recording of the meeting held today, Wednesday, April 10, at 10:30 am on The Hill. The hearing was entitled, “Priced Out of a Lifesaving Drug: Getting Answers on the Rising Cost of Insulin.” Once again, you can click the link to see the hearings yourself (remember that there was a vote which delayed the start and you must slide the video cursor to about 1:53:21 for the actual start of the hearings.–Know that it’s a long hearing)
This was the second part of the hearing from last week, you can read my article from last week by clicking this link.
I finished watching the hearings and to be honest, I placed my hands on my face and screamed until tears flowed down my cheeks. Literally. My stomach hurt. My head hurt. The witnesses, who were sworn in under oath and all waived the rights to legal counsel, were from Insulin companies: Lilly, Sanofi, and Novo and PBM (Plans Benefit Manager)s represented were CVS Health, Express Scripts, and OptumRx. These are the giants among the giants in all insulin supply and pricing. The names of the individuals matter little in the scheme of things but know they were all from the hierarchy of these companies and spoke on their behalf. I will be referring to the company name just to try to make this a tad easier to follow.
Chairwoman Congresswoman Diane DeGette (a mom to a daughter with T1D) relayed a heartfelt opening reminding the witnesses that the Committee heard heart-wrenching stories the week before from witnesses whose theme was universal; The present system in pricing of insulin is opaque, non-transparent, and no longer represent the patients best interests. She further challenged that the goal was not to unjustly blame but rather, what can be done to fix the current situation.
I think we might get further if we were to just blame.
It was clear that the line in the sand had the insulin companies on one side and the PBMs on the other. I listened as each one stated their case so matter-of-factly, as if this is the way it must be. There is a ‘formulary’ (the list of medicines) that is presently in place by the PBMs. Rebates, discounts are all based on these ‘formularies’. (I wish these people could have heard themselves talk). Depending on what discounts and rebates are given in these ‘formularies’ dictate the price you pay for your insulin. A generic insulin cannot be introduced because it would throw off the ‘formulary’ that is now in place. In a nutshell (according to the manufacturers), manufacturers cannot add lower priced insulin to the market because the PBMs will not allow those insulin prices to be included in the existing ‘formularies’. The PBMs stated that it’s the system in place that prevents them from doing anything.
Congressman Walden from Oregon asked the Insulin Companies if generic insulin was being prevented being part of the ‘formularies’ as a decision made by the PBMs? The answer was, ‘Yes’, from the insulin companies.
Dizzy yet……yeah, me too. It was like watching the Who’s on First routine. (click the link to see it, for what it was supposed to be back then, it was very, very funny) The routine made famous by Abbot and Costello that no matter how much is said, you end up right back in the same place……………………..not fully understanding anything.
That describes what I saw.
And yet, all six representatives touted what incredible discounts the patients were given and how much they had done for those who were in need. This created a stir and responses like the one from Congresswoman Schakovsky from Illinois who chastised all of them because giving the ‘breaks’ they all stated allowed each companies tax incentives for doing it. Loudly she stated, “Tell me I’m wrong!!!” No one spoke up.
When Congressman Ruiz from California asked, “What will each of you be willing to give up to make insulin more affordable?”, and when the answers started to sound like prepared statements on what is done for those in need, the Congressman shut it down, “Your solutions have not worked. Theoretic reasoning is not helping the patients.”
The representative from Sanofi was being challenged again, and again, and again, on savings by Congressman Kennedy when the rep started, “We announced today…….” “TODAY?????” Mr. Kennedy cut her off—-“Today????……being before congress…….”
Congressman Kennedy (his passion reminded me of his Great Uncle, Ted Kennedy, who was known as lion on healthcare issues) crossed his arms and stated that both sides have to stop blaming each other. “The status quo is not going to continue……it can’t.”
During the hearings, probably the most troubling statement came from the representative from Novo Nordisc who stated that the ‘formularies’ in place were the way for each insulin company to reach the masses, we cannot put that in jeopardy.
I guess from a business standpoint, sure, but what about the patient?…….they live in jeopardy constantly.
Congressman Tonka from New York asked a series of questions to be answered yes or no.
“Are you all aware of the stories of those rationing their insulin?”
All six—-“Yes”.
“Have any of you had to ration insulin?”
All six—-“No.”
“Have you ever had to choose between buying food for your family or buying life saving medication?”
All six—-“No, and no one should.”
The reasoning given by all six on what could and could not be done to alleviate this problem, or the lack of an answer therein, was nauseating time and time again. Leaning on the way ‘things have been done’ as the reason for not doing anything to change the problem today was frightening at best.
And after almost three hours, the hearing came to an end. I’ll wait until next week and I will reach out to Congresswoman Degette’s office and ask her the exact question that anyone who watched today’s hearings would find themselves asking…………………What in heaven’s name is the next step?
Our Congressional Leaders have been incredible thus far. Let’s hope it’s the start of the change. As one person noted, this mess has indeed created the one thing Washington has been seeking for over two years……. a nonpartisan discussion. That’s just fine, but did it have to be at the cost of members from our diabetes community and their very lives?
More will follow…………………bet on it!
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