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Earlier in the day, he had had a remarkable conversation with his daughter, Rose Keller ’24, and was compelled to tap out a comment below the posted article. 

"Thank you, º¬Ðß²ÝÑо¿ÊÒ, for funding my daughter's internship this summer. I had dinner with her this evening and we spent hours talking about her summer immersion in health care policy. She was positively ablaze with enthusiasm, and full of new insights. She asked: Why me? She thinks she's working on projects that by all rights should be undertaken by someone far older, more experienced, and better degree'd than she is at age 19. I laughed and said: Welcome to your career as an idealistic and ambitious person, and get used to that feeling because this is how it always is with important work.

Here's the thing: My daughter is a º¬Ðß²ÝÑо¿ÊÒ student who's living and thriving with a chronic illness. The wind is at her back because of scientific and medical progress, and of course a superb college that is supporting and educating her. The biggest threat she confronts is that civilization itself will fail her, so this summer she is doing something about it. You made that possible. I am overwhelmed with gratitude."

Touched by his words, the º¬Ðß²ÝÑо¿ÊÒ communications team tracked down Kreis and Keller to talk with them about what prompted the note. It turns out that both father and daughter are working hard to right what they say is a serious wrong in our country: the exorbitant profits pharmaceutical companies reap for new drugs and the way they convince patients with serious illnesses to help cover up the distortions of the pharmaceuticals market.

To help remedy this issue, Keller received a funded internship grant from º¬Ðß²ÝÑо¿ÊÒ's career office to work for the , a Boston-based nonprofit that evaluates the cost-effectiveness of drugs. Kreis—an attorney who oversees New Hampshire's Office of the Consumer Advocate—sits on one of ICER's public advisory councils. 

Below is a lightly edited transcript of a recent conversation with Rose Keller and her father, Don Kreis.

How Rose got her internship:

Keller: I’m a patient, myself, and a patient advocate in the cystic fibrosis (CF) community. There is a clear need for truth and unbiased sharing of knowledge in the patient community sphere. When I recognized that there was a distinct lack of general honesty, I reached out to people at ICER that my dad put me in contact with to see if they would maybe take me on at some point in the future, like when I had my bachelor’s degree and I was a little more employable. But they took me on this summer!

Kreis: It is important to understand that I didn’t get Rose her internship! It is true that I was the first contact between our family and ICER. Like Rose, I am active in the CF community and am concerned by the extent that the patient community has been co-opted by 'Big Pharma.' I started tweeting and posting on social media about that, and ICER noticed me and got in touch with me.

Eventually ICER invited me to join one of their three public advisory councils that reviews, evaluates, and votes on their cost-effectiveness reports. I think about prices of monopolists for a living because I am New Hampshire's ratepayer advocate, so of course I got it that we need to be mindful about how we price emerging medications so drug companies don’t reap usurious profits.  

Then I found out from Rose that she could seek to have the College provide her with a stipend that would cover the cost of what would otherwise be a volunteer internship. And the light bulb just exploded in a dazzling flash of effervescence over my head. I didn’t do the typical dad thing of calling up my friends at ICER and saying, 'Hey, would you be willing to take on my daughter?' All I did was plant a little seed. I gave Rose the email address of one of my contacts at ICER and said, 'Rose, write to this guy.' I just knew it would take off, and it did.

Why having a º¬Ðß²ÝÑо¿ÊÒ grant is helpful (and some words of wisdom from Dad):

Keller: [Without the funded internship from º¬Ðß²ÝÑо¿ÊÒ] I think ICER would have been uncomfortable. For one, they would have felt bad if they had taken me on in a volunteer position, and another thing, I don’t think it was conceivable for me to have an unpaid internship this summer. To live in Boston, or really Watertown, where my apartment is, wouldn’t have worked because it is so expensive to live there.

Kreis: I am convinced that the existence of that stipend is pivotal. Even if Rose were the sort of person who could afford to do an all-volunteer internship, the existence of a stipend like that means the nonprofit doesn’t have to feel like it is exploiting somebody. And it can take the intern seriously, because they know essentially that it's a paid position. The dynamic is such that the nonprofit has every motivation to take their intern seriously as a member of their team, and it's obvious that ICER is doing that.

Keller: Every day at ICER, I am having these moments where I ask, 'Why are you listening to the feedback I have to contribute? Because I am a nineteen-year-old rising sophomore in college and not a quarter as smart as all these people! But they’re taking me so seriously, and it's really humbling and really educational and I am so grateful for them taking me on.

Kreis: It is not that shocking when you think about it, because this is an organization that's full of physicians, economists, and people with PhDs, and what they lack and what they clearly know they need is connection to people in the patient community. So they needed to build a tie to someone like Rose, who is on the ground and an articulate member of a patient community, who has a disease that is very plugged in with Big Pharma, because Rose takes a lot of expensive medications that Big Pharma makes.

Keller: I can contribute to conversations [at ICER] because I bring a perspective they’re desperately short of at the office, but it didn't occur to me that they would want me to contribute to things so integral to ICER.

Kreis: I laughed when you told me about that! Because I think, as somebody who has been in the working world for several decades now, that there's always somebody who is going to be someone smarter than you, and more competent than you, and more credentialed than you. So there's always a feeling lingering in the back of your head that you are somehow not qualified. And yet, you have to act—that is what success looks like. You get cast in a particular role, you bring whatever knowledge or insight you have to bear on that, and you do your best. And, lo and behold, more often than not, you succeed. 

On the complicated matter of drug pricing:

Kreis: I think it is important for us to acknowledge that we can’t oversimplify these questions. It is not about trashing Big Pharma; we’re actually very grateful for the pharmaceutical industry for having partnered with the Cystic Fibrosis Foundation to develop some breakthrough medications. If it weren’t for those medications, Rose wouldn’t be at º¬Ðß²ÝÑо¿ÊÒ right now, she’d no longer be with us. So we acknowledge the really important contributions Big Pharma makes in the health care sector. And the shareholders of Big Pharma corporations deserve to earn a healthy return on their investment when one of their efforts hits pay dirt. But reasonable and appropriate profits are not the same as unlimited profits.

When a company like Vertex Pharmaceuticals rolls out a miracle CF drug and decides the list price of it will be $312,000 a year, that doesn't withstand scrutiny by an organization like ICER. That's why ICER is so great, because they take that number, $312,000, and analyze it in terms of its benefits to the world.

A relevant factoid is that Rose is not eligible to take it. She has rare CF mutations and thus is part of the roughly ten percent of CF people who are ineligible for the so-called modulator drugs developed by Vertex. You might wonder: Why rail against the price of a drug that Rose doesn’t even take? Answer: Because when Rose’s miracle comes—and it will—that drug will surely be even more expensive, unless we start pricing new drugs based on their incremental value.

Keller: Right, I would lose sleep at night if that is the price I am making my neighbors, family, and friends pay on their health insurance premiums. That is unconscionable for me. It doesn't sit right.

Kreis: Look at the flip side, though: the unconscionable thing that Big Pharma does is co-opt patient activists. After all, if you have cystic fibrosis, that $312,000 is not coming out of your pocket. So you will be grateful to the Big Pharma firm making a drug that is making CF a controllable condition for you. So of course you will become a defender and mouthpiece for the firm. So they can program you with their take on public policy, and it sounds more compelling coming out of your mouth than the mouth of a Big Pharma executive who is making a seven-figure salary.

Keller: Co-opting patients is a nuanced process. If you go on any patient advocacy foundation or any online patient community, nine times out of ten somewhere on their website you can find the logo of some large pharmaceutical company. They are not making explicit payments to us to go advocate for Big Pharma's policy agenda. But they might sponsor a retreat for patients or host a yoga class for the CF community. Yes, yoga is fun, I like yoga! I feel warm and fuzzy about Vertex when they make it financially possible for me to go out and do CF yoga. So it is not an explicit, 'Here, I'm paying you to be my lobbyist.' It’s more a general feeling of warm fuzziness that patients develop. So when Big Pharma comes out and says ICER is telling you you're not going to have access to these drugs, patients are already primed to see the situation through the rosy lens of, 'Oh Vertex, I love you! ICER equals evil.' It is an interesting but unfortunate situation we have on our hands.

Kreis: Also, Big Pharma companies give out coupons to patients to cover their copayments. So of course when you get the coupon, then you feel happy about the drug company, because you're not paying anything out of pocket, and you love them. I want to stress that Vertex Pharmaceuticals has done all sorts of amazing things for cystic fibrosis. Their modulator medicines are a scientific achievement they managed in partnership with the CF Foundation. I don’t want anyone to think that we think Vertex is a bad company—they’re a good company charging too much for its medications. 

In a better world, the government would be doing what ICER does; it would be assessing the value of drugs, and it would be requiring Medicare and Medicaid to pay the drug companies based on that assessment of a reasonable price. But unfortunately that's not the policy we have; that's the reason ICER exists.

Working as a trouble-making, social-change activist for the sake of civilization, itself:

Keller: I've lived my whole life pretty opposed to doing anything related to health and the health sector. Because I personally spend maybe two, three hours on my own health and health treatments a day. To think I would want to spend more time thinking about the health industry, health care, health anything...sixteen-year-old me is laughing at me right now. But I saw a need, and it is truly a social justice issue working at ICER. They are a mission-driven nonprofit, it is a noble pursuit of truth and fairness that needs so much support. I am so excited to be there.

Kreis: There is a difference between Rose being a CF poster child saying, 'Oh look at me, a person with a disease, and see how I'm overcoming it, so give a ton of money to this foundation!' and Rose being a trouble making, social-change activist who is saying, 'Look! I have CF, and I know that things have to change about the world, because civilization itself might fail all of us, and when it does, I am going to feel it first.

Keller: Yeah, totally.

Kreis: Yeah, totally.