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Bio Hackers versus Big Pharma: Tackling the Rising Cost of Insulin

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Tackling the Rising Cost of Insulin

As the cost of insulin continues to skyrocket patients are dying from trying to ration their medication. It’s an extreme example, but not unusual – the cost of insulin mirrors the broader health crisis in the United States. Medicine is too expensive and inaccessible. And as insurance companies continue to raise prices, more and more people are put at risk, especially if they’re uninsured, or under-insured. Today, we look at ways to combat the health costs associated with diabetes. First, we hear from a woman living with diabetes about her experience using Insulin. Then, we visit a group of community scientists called the Open Insulin Project, an organization trying to create its own insulin outside the lengthy FDA process and whether it’s worth the associated risks. And we talk about the benefits of Medicare for All, a policy which would get rid of private insurance and make all medicine and medical care accessible and affordable.

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Featuring:

  • Ana Malinow, Former president Physicians for a National Health Program
  • Aura Aparicio, Bay Area resident with Type 1 diabetes
  • Anthony DiFranco, Founder of Counter Culture Labs and the Open Insulin Project
  • Yann Huon De Kermadec, Ph.D., Lead scientist of the Open Insulin Project and Counter Culture Labs
  • Jessica Ching, Member of Open Insulin Project, organizer of the DIY Artificial Pancreas MeetUp for the Bay Area. 
  • Amy Tenderich, Blogger, founder of diabetesmine.com
  • Brian Roberts, Adult endocrinologist and head of clinical development at Rezolute Bio
  •  Jean Peccoud, Professor of chemical and biological engineering at Colorado State University
  • Jenna Gallegos, Post-doctoral researcher in the Peccoud Lab at Colorado State University

 

Credits:

  • Reporter: Kristi Coale. 
  • Producer and Host: Salima Hamirani
  • Staff Producers: Anita Johnson, Monica Lopez, Salima Hamirani
  • Executive Director: Lisa
  • Audience Engagement Manager: Dylan Heuer
  • Associate Producer: Aysha Choudary    

Music

  • Meydn – Havor – Pure Water
  • Revolution Void – Nebulous notions

 

 

Episode Transcription

Narr – I’m Salima Hamirani, and on today’s making contact. It’s not news that Healthcare in the United States is wildly overpriced and inequitably distributed. But today we’ll focus on efforts to change that.

 

ACT – We’re not waiting. We’re not waiting for FDA. We’re not waiting for the industry. We’re not waiting for our doctors to tell us it’s okay to do this. We’re just we can do this and this is important to our lives and our children’s safety. We’re just doing it. 

 

Narr-  We ‘ll hear about the Open Insulin Project,” a group of community scientists and bio-hackers who are making their own insulin from scratch,  And we talk to Dr. Ana Malinow , former president of Physicians for a National Health Program

 

ACT – So I think it’s a great project currently for individuals that have a difficult time being able to afford their insulin. But we shouldn’t live in a system where people have to depend on those kind of measures in order to provide life saving medication.

 

Narr:- Dr Malinow argues that, there’s another way to fight drug prices – and it’s called Medicare for All. 

 

Part 1:

Narr: Compared to other countries, Americans spend on average three times as much on medicine. Most people without insurance just can’t afford the medicine they need and even with insurance, some co-pays are so high that it’s still difficult to buy medication. Which leaves some people vulnerable. Like Alec Raeshawn Smith, a young man with type one diabetes/ He tried to ration his insulin when he turned 26 and was kicked off his parents’ insurance. Rationing insulin is extremely dangerous and Alec passed away in January, igniting a debate around the cost of drugs in the United States. It’s something that Aura Aparicio, from Northern California, worries about as well.

 

Aura Aparicio –  That is my worst fear. That is every type 1 diabetics worst fear is if you don’t have insulin you will have extremely high blood sugar, you can go into a coma and you will die.

 My name’s Aura Aparicio. A lot of people think that Type 1 diabetes is just juvenile diabetes. And I actually was diagnosed at 35. I was diagnosed during my pregnancy with my first daughter. 

Usually when you’re pregnant they do a glucose test and for some reason my glucose test was done at the tail end. And sure enough my blood sugar was like in the high five hundredths.Target is usually like ninety nine. And they said we don’t understand why you’re not in a coma. I was hoping it was gestational diabetes and that it would go away after the pregnancy. But no My pancreas basically just stopped producing insulin instantly and it was an incredibly difficult time in my life. I felt completely overwhelmed.

This is my PSA right here. Listen to yourself. Listen to your gut. I did tell my nurse practitioner that I felt like something was off and there were all of these kind of clues. I was extremely thirsty all the time and I was having to go to the bathroom all the time because I was drinking so much water. And then something else that’s kind of a little icky. There was an ant trail going to the hamper. And we didn’t know until later and reading about this is that my clothes had. Really high sugar on it.

Type 1 diabetes is where your cells that create or produce insulin start attacking each other so it’s an auto immune deficiency disease type 2 diabetes your body does produce insulin but cannot regulate it. Some people do have to take some insulin as type 2 diabetics Type 1 diabetics you have to in order to stay alive. I do multiple daily injections I have two types of insulin that I take. One is a long acting insulin and the brand name that I use is Lantis and that gives me a base. And then I have a fast acting insulin which that brand name that I use is humolog and that one you have to calculate how many carbohydrates you’re going to eat during a meal and then you do the math and figure out how much insulin you need to give yourself.

 

So I’m very fortunate that my husband works for the city and county of San Francisco. They have a very wonderful health plan. So I’m on his health plan as well as our two daughters. I do think of if one day my husband’s not here or he loses his job what will I do. And last night I just started having this fear dream about losing my little bag that I have that I put in my purse where I store my insulin. And all of my diabetic supplies and I just woke up with this terrible like tightness in my chest and feeling just anxiety about losing what is basically my lifeline. We’re talking about insulin but there’s all sorts of other things. You know there’s the glucose emitter to check the glucose. There’s the test strips. There’s the needles and other people that are on pumps are on insulin pumps or a CGM is continuous glucose monitors those are extremely expensive. So I’m very fortunate to have the health insurance but it’s always in the back of my mind you know what if I don’t have insulin. There’s a lot of people I’ve been reading a lot and hearing about people dying because they’ve had to ration their insulin.

 People should not be penalized because they have an organ in their body that doesn’t function. (laughs)

 

Narr – That was Aura Aparicio sharing her story – about how she depends on access to insulin to survive. Aura’s situation is common. People who depend on insulin constantly worry about its cost. And, as the price of insulin continues to rise, more and more patients are ending up in emergency care from trying to ration their insulin. But there are some solutions. Reporter Kristi Coale introduces us to a community of citizen scientists who are trying to help diabetics take control of their own care.

 

Part 2

 

Narr: We’re at the Counter Culture Labs a community-based science lab Oakland, California where a group of people are meeting to discuss the next steps for their organization, the Open Insulin project. Anthony Di Franco is one of the founders and has Type 1 diabetes. 

 

Anthony Di Franco: As the project has made progress and gotten into more sophisticated questions and the membership has also gro wn. … We’ve had to start to figure out how we’re going to organize the actual production of medicine by people for themselves to use … 

 

Narr: While one group sorts out business plans around some folding tables, a few others are filling vials with yeast cells in the lab area. 

 

The Open Insulin project is a DIY endeavor to make a low-cost insulin. The group here are all volunteers.

 

Yann DeKoumedec: I’m Yann DeKoumedec, and I’m a research scientist in the open insulin project. I’m also the lab manager at Counter Culture Lab. 

 

Narr: Yann has a pHD in biochemistry from France and does not yet have a permit to work in the U.S. 

 

Yann DeKoumedec: This is my day job. 

I really like the political aspect of it … the idea that it’s not only about science and how to produce insulin but also how we can create a different model how to distribute insulin. How to make a manufacturing place run not only for profit but also for the interests of the people and the patient. 

One of the goals of counter culture lab is to allow people which don’t have a scientific degree and without scientific training to come and do science, and you have to learn how to communicate in a more accessible way.

 

Narr: So Yann trains others as lab techs to help him. The process is complicated, but basically they’re inserting  DNA that has instructions for making insulin into yeast cells. 

That protein of interest is one that can make insulin. The process of making this protein is no different than what the major insulin makers have done. What’s special about what Yann and his team has done is they’ve developed their  insulin-producing proteins from scratch. The group is looking for a way to get their insulin to patients. They’re looking to get regulatory approval for manufacturing the medicine and figure out how to scale up production. More importantly, the project wants to keep its methods for making insulin in the public domain so that local insulin factories will pop up around the U.S. and the world, operated by patients.

 

Anthony Di Franco: There are a lot of reasons why people should be making their own medicine and should have control over the means of doing that. We’re seeing right now a system where people don’t control the means of making their own medicine and it has been ruthlessly exploiting people with diabetes. A lot of them have not been able to afford their own insulin because of regular price increases … 

 

Part 2 Scene 2

 

Diana DeGette: Today the subcommittee on oversight and investigation is holding a hearing entitled:  “Priced out of a life-saving drug: Getting answers on the rising cost of insulin.” CROSSFADE UNDER

 

Narr: Congresswoman Diana DeGette, Democrat from Colorado kicks off a hearing to examine why insulin prices have gone up so much. 

 

Diana DeGette: As the committee is well aware, despite the fact that insulin has been around now for almost 100 years, it has become outrageously expensive. For instance, the price of insulin has doubled since 2012, after tripling in the past 10 years. [CROSSFADE UNDER HERE]

 

Narr: DeGette shares what she’s heard about insulin affordability issues from the people she represents.

 

Diana DeGette: Sierra has been struggling for over a year and a half to pay for her insulin. Even after rationing her insulin, she still paying over $700 a month. It’s simply unacceptable that anyone in this country cannot access the drug that their life depends on.  …

 

Narr: Eventually, DeGette engages the panel that includes officials from the three insulin makers and three pharmacy benefits managers..

 

Diana DeGette: So here’s thing: everybody’s saying sure the list price is high but there’s all these workarounds. But not everybody gets these workarounds. And the question is, why is the list price so high? [CROSSFADE UNDER]

Narr: Why is it so high? The pharmaceutical industry had a chance to respond during the hearings. Doug Langa, president of insulin maker Novo Nordisk, gives a response that is repeated throughout the hearing.

 

Diana DeGette: There is this perverse incentive, misaligned incentives and encouragement to keep list prices so high. And we’ve been participating in that system because the higher the rebate, the higher the list price, the higher the rebate.

So you also think its the rebates that the prices have gone up so much in the last 10 years.

There’s a significant demand for rebates. We’ve spent

I’m sorry [fade under]

 

Part 2 Scene 3

Narr: The pharmacy benefits managers or PBMs were also present. Here’s Thomas Moriarty, executive vice president for pharmacy benefits manager CVS.

 

ACT: .. now Mr. Moriarty, I bet you have a different perspective on why the list price of insulin is so high.

 

Thomas Moriarty: Chairwoman, rebates are discounts. And as we’ve disclosed more than 98 percent of those go back to our clients.

 

ACT: I understand, but why do you think the list prices are so high?

 

Thomas Moriarty: I can’t answer that, that is the pharmaceutical manufacturers’ purview.

 

ACT: But you don’t think it’s because of discounts?

 

Thomas Moriarty: I do not, no.

 

ACT: Ms. Bricker?

 

ACT: I concur. I have no idea why list prices are so high. But it’s not a result of rebate.

 

Narr:  One by one, the Pharmacy Benefits Managers or PBMs blame the insulin makers for the high price. But the insulin makers say they’re forced to raise prices to make up for the rebates given by the PBMs. 

 

ACT: Is the rebate Ms. Bricker .. is the rebate system transparent right now would you say?

 

ACT: The rebate system is 100 percent transparent to the plan sponsors and customers that we service. So the people that hire us, employers, the government, health plans. What we negotiate for them is transparent to them.

 

ACT: So that we can track the list price, then we can see the rebate, then we can see the net price, then we can see the savings that you pass along to the consumer… That’s all completely transparent to the public.

 

ACT: It’s not transparent to the public unless they are our patient. 

 

ACT:  Ummhmm. Should it be?

 

ACT: We don’t believe so.

 

ACT:  Should it be trade secret? Is that the problem? Like proprietary ..

 

ACT: The reason I’m able to get the discounts I can from the manufacturer is because it’s conf

 

ACT: It’s a secret. 

 

ACT: Because it’s confidential.

 

ACT: Yeah, cuz it’s a secret. What about if we made it completely transparent … who would be for that? 

 

Narr: So the industry isn’t going to come clean about insulin’s skyrocketing prices. And that means we’re still left asking: why is the cost of insulin so high? 

 

Part 2 SCENE 4

Jessica Ching: There’s a complicated web of reasons why the price of insulin has gone up but in a nutshell, it’s because they can.  …

 

Narr: Jessica Ching is a member of Counter Culture Labs and the Open Insulin Project. She has type 1 diabetes.

 

Jessica Ching: When you have type1 diabetes, you have no insulin production whatsoever. So I am forced to inject insulin on a schedule at a dosage and timing that mimics my body how it would have functioned if I had not had this disease. … So I’m a big do it yourselfer and I learned early on that I needed to take my own life into my own hands.

 

Narr: Jessica is like a growing number of diabetics who take a DIY approach to treating their disease. Jessica organizes a group of diabetics who meet regularly to learn about and build an artificial pancreas …

Like this gathering in a Santa Clara conference room on a Saturday afternoon. 

Joe Moran is helping Amy Tenderich install some software on her smartphone that will connect her blood sugar monitor to her insulin pump.

 

Joe Moran: What we’re doing is connecting this device that measures our blood sugar continuously with the pump which gives us the insulin, and you need all this technology so they can talk to each other and inform each other.  It’s a cobbling together of a bunch of products to recreate what your pancreas does.

 

Narr: This make-shift device is not available yet from any company, so what these people are doing is not approved by the FDA. But that’s the state of some diabetes care right now.

 

ACT: We’re not waiting. We’re not waiting for FDA. We’re not waiting for the industry. We’re not waiting for our doctors to tell us it’s okay to do this. We’re just we can do this and this is important to our lives and our children’s safety. We’re just doing it. There’s always concerns about anything that’s not supported. This not FDA evaluated and approved. The flip side of that is that insulin is a dangerous drug and for decades now, we’ve been throwing people out there with this insulin saying take it try to figure out your dosing and people make mistakes all the time. That’s why people end up with insulin shock and you know, 

 

Narr:  So people with Type 1 are comfortable using technology that’s made outside the normal industry/government process. But what happens when an actual drug like insulin is made by a community lab like Open Insulin?

I put this question to Brian Roberts, head of clinical development at Rezolute Bio. His company is at the beginning stages of developing an insulin that would be taken once a week by patients with Type 2 diabetes.

 

 Brian Roberts:  For our insulin program, we would anticipate about a 10 to 15 year discovery and development track and that is why there aren’t many companies developing novel insulins and it really is in the domain of the larger pharmaceutical companies, a few in particular  

… for chronic diseases where you need to demonstrate patient safety and a large number of clinical trials or large number of patients with large clinical trials. That process can take at least 10 years.

 

Narr: So Rezolute is making a new insulin. Brian Roberts understands that his company is in for a lengthy process – one that is long due to the emphasis on safety. That’s what he’s concerned about with a project like Open Insulin. 

 

 Brian Roberts:  I think that … the solutions that are being worked on Via community-based. Science organizations are admirable and may be part of the solution as long as they are operating within the constraints that are meant to protect patient safety.

 

Narr: But safety for type 1 patients struggling to pay for  their insulin might look different than safety for people with other ailments. That’s what some researchers are saying. 

 

 Jean Peccoud: My name is Jean Peccoud.

 

Narr: Jean is a professor of biological and chemical engineering at Colorado State University. His lab sponsors graduate student research on low-cost manufacturing of insulin. 

 

 Jean Peccoud:  Certainly the FDA sets very high standards for how medicines are approved.

But when you end up in a situation where you have extremely safe drugs that are essentially inaccessible because of the price and the alternative is having no drugs and essentially dying, maybe there is a middle ground for drugs that may be slightly less safe, but much safer than the absence of drug.

 

Jenna Gallegos: My name is Jenna Gallegos.

 

Narr: Jenna is postdoc student in Jean’s lab at Colorado State.

 

Jenna Gallegos: I think what the open insulin project is trying to do is they’re trying to put that balance in the hands of patients.  We can imagine a future where patients who are more informed can understand some of the risks involved and decide for themselves what that trade-off between access and safety should be.

 

Kristi Coale: I’m Kristi Coale, reporting from Oakland.

 

Part 3: Medicare for ALL

Narr: You’ll find links to the Open Insulin Project at the Making Contact website. RadioProject.org.

To explore the larger context of the cost of medicines and healthcare I sat down with a doctor named Ana Malinow . She’s a  past president of Physicians for a National Health Program. Dr. Malinow has taken care of undocumented, refugeee, and poor children in Cleveland, Houston and Pittsburg and is currently a pediatrician in San Francisco. She said she’s excited about projects such as the open insulin project. But she has some reservations.

 

Ana Malinow: So I think it’s a great project currently for individuals that have a difficult time being able to afford their insulin. But we shouldn’t live in a system where people have to depend on those kind of measures in order to provide life saving medication.

 

Narr: Doctor Malinow thinks there’s another way to provide diabetic patients with the drugs they need to stay alive. And it’s called Medicare for All.  

 

Ana Malinow: So Medicare is a single payer system that we have in the United States for individuals that are 65 and over and also for individuals that have end stage renal disease. And it was created in 1965 passed by Congress. It was created to include all the seniors at that time about 50 percent of seniors lived under poverty because of the fact that their health care costs were so high. And once we were able to pull all the seniors into Medicare their poverty levels really went down significantly.

 

Narr: Medicare for all is also NOT like Obamacare.

 

Ana Malinow: The difference between Obamacare and Medicare is huge. So Medicare is a publicly funded privately delivered health care system and that means that anybody over 65 and under 65 would be included in the system. So everybody in nobody out. It also means that all doctors would be in network so you wouldn’t have anybody out of your network. So that’s Medicare for all. { 1 second room tone?} Now Obamacare keeps the system that we have in place and so the way that I like to think of our health care system is like a pie. About 50 percent of us have employer sponsored health insurance, about 7 percent of us have non group private insurance. About 20 percent of us have Medicaid. About 14 percent of us have Medicare. And then almost 10 percent of us or 29 million individuals are uninsured. { 1 second room tone} So what happened with Obamacare is that their purpose their goal was to decrease the number of uninsured right. And if you think of this as a pie and you’ve got certain slices of the pie in order to shrink one a piece of the pie then all you need to do is just make the other slices of the pie bigger. Right. And that’s precisely what Obamacare did.

Basically it mandated that everyone either be covered through private health insurance or through Medicaid if they were eligible.

 

Narr: Unfortunately, just increasing the number of uninsured americans isn’t enough. 

 

Ana Malinow: You know just having health insurance doesn’t necessarily mean that you’re going to have health care coverage. So among the insured 44 million Americans are actually underinsured. That means that they spend either 5 to 10 percent of their income just on health care. And so that means that a lot of people are not going to go to the doctor because they know that they have a huge deductible that they have to face every single year or they have huge co-pays that they have to face every year or they’re not going to get the prescription drugs because they know that they have huge co-pays as well.

 That means that you have to spend your income on paying for premiums for co-pays for deductibles for coinsurance. It also means that people can go bankrupt due to medical bills.

 

Narr: And despite all the healthcare spending by patients, and by the government itself,  the United States remains a surprisingly unhealthy country.

 

Ana Malinow: So we have an extremely expensive health care system that takes up almost 20 percent of our GDP and yet we are number 24 in the world in healthy life expectancy number 25 in preventable deaths. And number 37 in health care systems overall. So despite the fact that we outspend almost every other country by twice as much our outcomes are not twice as good.

 

Narr: So, how did we get here? First of all, why did we end up with a system were half of us get our insurance through our employers? 

 

Ana Malinow: The history of health insurance in the United States is very very interesting. And it started in the 20s. Most people were not insured. And that’s because health care costs really were not that big. Right. But as medicine advanced, the health care costs advanced as well. And in the 30s there was a wage price freeze and employers in order to attract employees workers gave them benefits instead of increasing their salaries. Right. And so this was one way to get workers to come to work in these companies. And it just perpetuated itself to the point where today many many employers offer health insurance and that’s a huge bargaining chip right, that unions are constantly fighting in order to be able to retain their health benefits because they’re so so expensive and so important.

 I believe it’s the number one reason why workers go on strike is to keep their health benefits.

 

Narr: But relying on your employer to give you health insurance has a lot of downsides.

 

Ana Malinow: More people are changing jobs. Most people I believe have to change health insurance every two years or so because of the fact that they keep changing jobs.

And employers actually are the ones that are choosing your health insurance for you. Right. And if the following year that your employer gets a better deal from some other company that’s the company you’re going to go with not one that you liked. And oftentimes that means changing your doctors as well.

 

Narr: Not to mention that this idea of having an employer provide healthcare came at a time when a lot of people HAD salaried life-time work. These days, most of us work part time, or freelance, or are part of the gig economy. We’re not getting healthcare through contract work. That’s why doctors like Ana Malinow think moving to a universal health plan is so important.

 

Ana Malinow: So there are many benefits to moving to a Medicare for All system for one. As I mentioned before everybody’s in and nobody is out. That means that all residents in the United States are covered and it covers them from birth or probably from conception to death. It is comprehensive so that it covers all preventative and primary care inpatient outpatient emergency care. { 1 second room tone}  It covers mental health substance abuse it covers hearing vision dental. It covers physical therapy. It will also most importantly overturn the Hyde Amendment and provide reproductive health and reproductive rights for women as well as abortion. It becomes a true comprehensive package. It is universal. As I said it is accessible. And the other thing is that it is affordable because one of the things about our health care system that everybody says all the time all we can’t afford to have Medicare for all what we can’t afford is what we have today.

 And you know Medicare for All is not a new idea. We’ve had this idea and iterations of it since since the 20s actually and it’s gone up to Congress periodically and periodically there’s been this surge and then it sort of dies down and then there’s another surge and then it dies down. And I really do think right now we’re on this sort of massive Apex where there’s just massive support for Medicare for all. { 1 second room tone} And I think the reason why there’s such massive support is because things have gotten so bad. I don’t believe that things have been this bad before. People are really suffering. They are really going into bankruptcy and they’re really afraid. And so I think that that’s why there’s this massive support.  { 1 second room tone} Now having said that there’s massive support I have to say that there’s going to be massive resistance because we spend three point five trillion dollars in health care every single year. Now at the end of the day somebody takes home three point five trillion dollars. So those individuals those stakeholders that are bringing home that much money are really going to resist not being able to take that money home.

 

Narr: Medicare for all, in other words, is going to be a rough fight. Because there are so many players and private insurance is such an entrenched system.

 

Ana Malinow: Private insurance companies are going to be hugely impacted by Medicare for All. Pharmaceutical companies are going to be hugely impacted because under Medicare for all the government can negotiate with the pharmaceutical companies to get the best price which is exactly what happens everywhere else in the world. And that’s a reason why in the United States we spend twice as much on average for pharmaceutical drugs than other countries in the world. So insurance companies, health insurance companies pharmaceutical companies and then you know these hospital CEOs

But also look at politicians they are really benefiting from the system because how do they get campaign funds. Well they get it from CEOs get from pharmaceutical companies they get it from private health insurance companies right. And so that’s how they’re funding their campaigns.

 

Narr: But, there are still ways to get Universal health care in the United States

 

Ana Malinow: So this is how we fight for Medicare for all. One

 

Narr: if you’re interested in learning more about upcoming policy battles. There are a number of bills that we’ve linked to on our website www.radioproject.org, While It’s unlikely that a trump administration is going to support Medicare for All. Future  administrations might and there’s growing support among some democratic candidates running in the next election. Advocates for Medicare for All also say that exploring it is a way to learn,share and build our vision

 

Ana Malinow: So I say that you talk with everybody that you know about how important this is and how health has impacted you and ask people for their health care stories. You would be amazed what happens when people start to open up about how they have suffered under the health care system and let them know that there is a better system out there. It’s not a socialized medicine system. That is what they have in the UK which by the way is a great health care system and they have better outcomes than we do on many ways. But a socialized health care system is public funding and public delivery. In a single payer system like Medicare or Medicare for all, you have publicly funded and privately delivered system so it is not socialized. So maybe just sit and talk with people become educated on the subject and talk with all your family your colleagues your co-workers your friends and let them know how important this issue is for everyone.  

 

Author: Radio Project

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