Steve Freed: This is Steve Freed with Diabetes in Control and we’re here in San Diego for the American Diabetes Association 77th Scientific Sessions. We have some really great interviews with some of the top endo’s all across the globe.
We have two special guests here, Henry Anhalt and Howard Steinberg. Some of you may know Howard from the show dLife. So we’ll get started. First tell us a little bit about yourselves.
Henry Anhalt: So I am a pediatric endocrinologist with a particular passion for type 1 diabetes. I’ve been practicing pediatric endocrinology now for over 20 years and I’ve spent some time in biotech as well as in the pharmaceutical industry. I am delighted to be here today to talk about Insulin for Life USA (IFL-USA).
Steve Freed: And Howard, what about you?
Howard Steinberg: I’m an entrepreneur; most of my career has been in marketing and consumer marketing of various kinds. I started a diabetes education and content platform called, dLife several years ago which included a television show, website and many other channels to better engage and empower the diabetes population. I’ve been happily involved with Insulin for Life for the past three years as a board member.
Steve Freed: So tell us a little bit about your organization, Insulin for Life USA.
Henry Anhalt: I think it’s important to recognize, before we go any further, that the challenges around insulin availability across the globe are really challenging and so we take things for granted in the developed world, like in the United States, where people argue about pricing of insulin. But at the end of the day people have access to insulin. As you think outside the bubble of the developed world, you see that there are about 90,000 children across the globe that have absolutely no access to insulin and it’s unconscionable to think that in 2017 there are children dying because of a lack of access to insulin.
Howard Steinberg: Yes, I would just add that it was shocking to me when I got involved. Someone had just mentioned a statistic to me that a child who discovers type 1 diabetes, maybe not diagnosed, but has type 1 diabetes in Mozambique, for example today, has the same life expectancy as a child diagnosed in the US before the discovery of insulin. That just kind of brought it home and it’s just unconscionable and unacceptable. It’s a humanitarian issue that access to insulin and testing supplies are not universally available.
Steve Freed: You know that’s interesting because I would think that if there was a shortage you could pick up the phone and call the president of Eli Lilly or the president of Novo Nordisk and say there’s a need, these kids have no insulin. So there’s 50,000, you only charge $400 for your insulin you could certainly afford to donate some. For some people, it’s life or death. Why isn’t that something?
Henry Anhalt: So there are pros and cons to living in the developed world. One of them is you have access, the other is you have bureaucracy, lawyers and regulatory considerations that, oftentimes, are stumbling blocks in the ability to distribute insulin in the developing world. So even though it would make sense that if you have insulin that may expire in 3 months or 4 months sitting on the shelves, it may be more appropriate for the Pharma company, and I’m not calling out Lilly or Novo, etc., to discard that rather than to be able to donate it because of concerns around liability. I’m involved with diabetes camps and at the end of the season there’s insulin that’s left and it gets destroyed because there’s only a certain amount that’s donated for a certain time. It’s tragic to think that there are obstacles of renewing contracts if that insulin is then diverted to an organization like Insulin for Life.
Steve Freed: So what are you doing at ADA where they are announcing studies? What does that have to do with generating insulin? There’s got to be a reason for you to come all the way here?
Howard Steinberg: Well, our reason for being here, specifically, is we hold a reception here just to further awareness and involvement via the gathering and all the activity and people that are here. This year, in particular, we are premiering a short documentary film about lack of access to insulin and supplies and how Insulin for Life helps fill that gap. And just to tag on to what Henry said that it’s a very valid question when you talk about 90,000 lives aren’t an overwhelming quantity… why can’t we solve that problem with government and big Pharma? And the fact is that we can’t for a lot of bad reasons and what’s wonderful about our organization is that it’s people helping people; it’s simply individuals who have extra supplies or even supplies that they might use or that are near expiration, and get it in the hands of those that need, and so that is what is wonderful about this organization.
Steve Freed: So how can Health Care Providers (HCPs) help in what you’re doing?
Henry Anhalt: I think what’s most important to realize about how HCPs actually help in this, is to raise awareness…to have folders and brochures and cards that they can distribute to patients. In a day and age where physicians are so busy and educators are so busy, we oftentimes forget about things like this. But if we can raise awareness that there’s something that can be done so that insulin that’s not opened, that’s near expiration, 3 months or more, meters, test strips, glucagon emergency kits, lancets, lancing devices, pens, vials…if we can raise awareness, if the HCPs who encounter patients can make them aware that they can do something really good with these things and help people around the globe, I think that’s the single most important message I would send to an HCP about how they can help. Of course donating money and volunteering time is something that we desperately need, but on a drug and devices standpoint, that’s where they can be most helpful.
Howard Steinberg: It’s also helping communicate to their patients, customers and other constituents, that we exist and there’s an opportunity to donate excess supplies, that also their own excess supplies that might be sometimes returned to manufacturer or otherwise discarded, send them on to us and we’ll make good of it; we will save lives with it. That’s important and that’s where providers and all through the healthcare chain can contribute.
Steve Freed: What’s the difference because I’ve heard of this organization for overseas, Global. What the difference between that organization and USA which you are involved with?
Henry Anhalt: So there are nine organizations that fit under this umbrella, global organization, Life for a Child, and that organization, that global organization, really serves as an administrative hub to ensure that there isn’t overlap and redundancy. So these nine affiliates, of which we’re on the board of the one based in the United States, is part of that larger organization. I think the hope that we have at IFL USA, is that we will partner under the guidance of this larger global organization, with the other nine affiliates, and find ways to leverage that one voice to raise more awareness, more funds and be able to be, I think, a much larger [organization] and strengthen the voices of all those organizations into one rather than individual voices split up across the country. But this is new and people didn’t think that this was possible. And the vision that Mark Atkinson and Carol Atkinson have brought to us and have given us that privilege to participate with, it’s a new concept where people have to begin to think and spread awareness. So we hope in the near future that all of the affiliates will be able to, under the umbrella of the global organization, speak with one voice more loudly to help raise awareness and raise donations and funds.
Steve Freed: There’s organizations from multi-billionaires in this country that pledge to give away all their money. Have you contacted those organizations?
Howard Steinberg: Well, I’m sure we’ve tried to contact various relevant, high-worth individuals that may be sympathetic and empathetic to the cause so that goes on, but we’re a small organization and you can cover just so much and as important as money is, so are supplies. So we really, as Henry was mentioning, have two channels of donation, we need people and organizations to send their supplies and we can also be the victim of our own success because the more they send us, the more of an operation we need. There’s a lot of logistics involved in getting those supplies to the nations and the agencies that can distribute them.
Steve Freed: So if a physician, and it could be a big source as you are aware, has 10 vials of insulin in his refrigerator and it’s got 3 to 6 months dating on it and the rep is going to be in his office a week from Thursday, he can actually pack that up and send it to you. Can he send one bottle? One syringe? There’s got to be some kind of number that makes it worth everybody’s time.
Henry Anhalt: Yes, I think it’s really an issue around common sense. So if a practitioner knows that he has a large collection of samples, and I wouldn’t put a minimum or maximum, clearly the shipping costs have to be considered and so, by scale, if you can put more stuff in a box, it’s preferred obviously then. But at the end of the day, what we really need are those supplies. We have recently received a very large donation of syringes themselves, but there’s still a tremendous lack of insulin, near expired insulin, glucagon, ketone strips, etc. So we’ll take whatever we can and if anybody has any questions there are two ways to get more information. One is to go on the website. There clear instructions on what the procedure is to get those supplies to us, or they can call our office and speak with primarily Carol or somebody else on the staff and we would be glad to guide health care practitioners, Pharma, or individuals on how to donate those samples to us.
Howard Steinberg: IFL-USA.org
Steve Freed: What does the IFL stand for?
Howard Steinberg: Insulin for Life. I hope that [website name] is running on the bottom of the screen. (Laughs) Everything you need to know is on that website.
Steve Freed: How big is your organization?
Henry Anhalt: In terms of number of employees…?
Steve Freed: Number of people working on this.
Henry Anhalt: It’s a really small number. I don’t know exactly how many people are volunteers vs. those that are salaried but I would like to venture to say it’s less than 10, probably less than 7 or 8 but I don’t know that exact number, I can get back to you.
Steve Freed: So you haven’t given up your practice to do this?
Howard Steinberg: We’re board members and we contribute time and yes there’s a handful of people, a whole bunch of volunteers, but an important number here are the almost 8,000 humans in 12 different countries whose lives we affected last year, by delivering supplies to those almost 8,000 people in 12 countries.
Henry Anhalt: And just to add to what Howard is saying, so that people understand that there’s a vetting process around how those supplies get to patients. We don’t send them directly to the patients. We send them to HCPs that we vetted, that we have evaluated to ensure that those HCPs in the different countries that we supply, that they ensure that the supplies actually get into the patient’s’ hands because we talked about what happens in countries, in developing countries, where insulin is scarce. People are selling insulin on the black market, if you will, to patients, to the highest bidder, and that’s not what we as an organization stand by. We stand by getting it to the right people, the right time, to get it to the right patients who need it.
Steve Freed: Your organization is called Insulin for Life USA. It’s not called global, so I would assume that it’s for people here that you’re using it. Is that a misnomer?
Howard Steinberg: No, we’re collecting and operating domestically and reaching out to the US, North American community for contributions, but we disperse the supplies mostly in developing world, from Gambia to Belize, to Haiti, Ecuador and Mexico. As Henry mentioned, there’s different affiliates of IFL. It was started originally in Australia by a wonderful visionary man named Ron Raab who got it started and the USA affiliate is driving a lot of new activities.
Steve Freed: So how long have you been involved?
Henry Anhalt: I’ve had the privilege of being on the board now for about 6 months or so. I feel that we’re in our nascency, but we’ve set goals and each year we hope to exceed those goals. I think for insulin this year, for 2017, we’re looking to donate about 75,000 mL of insulin which people know that’s a large amount of insulin but last year I think we were in the high 60s so this is a year that’s very important to us, a year of growth. And when natural disasters happen like what happened in Haiti last year, that gives us a greater opportunity to raise awareness and I think we see a bump up in contributions at that time.
Steve Freed: So if you took care of everybody, what would you need as far as insulin goes? You said there’s 90,000?
Henry Anhalt: Yes, I would not venture to say because of the variability of people’s insulin needs but I’d always err on the side of extra insulin. But I don’t know what that number would be, I mean for us as an organization 75,000 mL of insulin is a lot and if we can get that I think we’ll make a significant difference in so many people’s lives. It’s not quality of life, it’s life and death.
Steve Freed: And what about glucose strips and glucose meters?
Howard Steinberg: That’s the other key supply item, insulin and glucose strips. And if we can help patients, in particular youngsters, in the developing world, test just once a day, that is a big leap forward in many areas. So that is a critical need as well.
Steve Freed: How long has the original organization been around?
Howard Steinberg: I venture to say at least 20/25 years since Ron got that started. And now the power, I should mention again, Mark and Carol Atkinson who have been amazing in driving this forward and totally selfless and have spent their lives giving; momentum is on our side so the last thing I’d love to leave your audience with is just stop for a moment and think about what’s not obvious and what’s not in front of you and not the patient sitting across from you or the customer across the counter, but the one in a country where they don’t even have power to plug a refrigerator in to keep insulin cool. They desperately need us to be aware of them and to keep that top of mind and contribute whatever we can.
Steve Freed: I would think that the UN would be a place, possibly, that can provide some help in financing. It’s a national and world organization.
Howard Steinberg: There’s all kinds of organizations. The important thing is we’re not waiting for a third party organization to help us. We’re doing it and it’s people helping people. And the HCPs, retailers, etc. can be great facilitators in helping people help people, and we can stay out of the politics of insulin pricing, we can stay out of the politics of governments and black markets and just do our best to get stuff done.
Steve Freed: What has been the response from the manufacturers? That it’s too political? It’s too difficult? There’s too many legal issues?
Henry Anhalt: Again, I don’t want to suggest that the insulin manufacturers wouldn’t want to support it. And we make, each day, headway into dealing with this challenge but again we live in a society that’s fraught with regulatory concerns and legal concerns and, I might add, that as a non-profit 501(c)3 we also have a license to be able to legally do this. I just wish that we could call up company X and get 10 pallets of insulin delivered to us. We’re making a plea for that to happen but as it stands now we’re still facing significant issues.
Steve Freed: What about expired insulin?
Henry Anhalt: Expired insulin we cannot, for obvious reasons, legally as well as this patient safety, cannot take [expired] insulin. But near expired, 3 months or more, when it comes to strips, a year or more, is something we would take… glucagon emergency kits 3 months or more, etc.
Steve Freed: So three months you have to get it in their hands, pretty rapidly, so is that all calculated?
Howard Steinberg: We’ve got a pretty logistical system. Odds and ends come in to the Gainesville, Florida office and then it’s sorted and organized so that shipments go out to exactly to who needs it in the right combination for their needs.
Steve Freed: Are you looking for volunteers?
Henry Anhalt: We are always looking for volunteers. Again, three ways to help out: donate supplies, donate money, or donate your time.
Steve Freed: But you only have one office in Florida for the whole US?
Howard Steinberg: Right but anyone that would be a volunteer, simply an ambassador, to spread the word and help bring attention to the matter and help ensure that others donate their supplies as well as themselves. Whether you’re in an endocrinologist’s office or a retail store, make them aware. And part of that is incumbent on Insulin for Life when we’re going to step up our marketing efforts so that there’s materials and things so that it’s easy to communicate and stay top of mind.