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August 23rd, 2011

I have a disease too profitable to cure



diabetes-too-profitable

Diseases are profitable. While that is a sad thing to think about, it’s true. Revenues are generated by illness because treating them requires resources. What’s even more upsetting is that the world seems to currently value the profits generated by disease more than seeing people freed from sickness.

At 12, I was diagnosed with Type I (juvenile) Diabetes. Type I is an autoimmune disease that destroys the insulin-producing cells in the pancreas. It usually starts in childhood, and has to be treated continuously with insulin. Type II, conversely, is when your body can’t properly use insulin mostly due to genetics and/or lifestyle.  There are multiple treatments for this type of Diabetes, and it usually develops in adults. Although people often confuse the two types, they are actually very different diseases with very different causes.

In Wikipedia’s words, treating and managing Type I is “quite burdensome” (I would use something a bit stronger). If your blood sugars are not managed within a specific range, you can have a seizure or go into a coma. The hard part is that everything – from food to amount of sleep, hot showers, exercise, stress, and hormonal changes – affects blood sugar levels. Traveling is difficult; going to “developing nations” is unadvised.

In 2008, I went on a volunteer trip to rural Guatemala with a medical youth empowerment and public health non-profit organization that I had helped to start. While the experience was great, managing a difficult disease in a new environment was so stressful and scary that I have not returned since. I still work with the organization, but do so from behind my laptop at home. As wonderful as Mac computers are, it is a poor exchange for living in the beautiful Guatemalan landscape.

I also came home from that trip to a tanked economy with no idea how I was going pay for this disease when I couldn’t get health insurance because of its classification as a “pre-existing condition.”  Luckily, I have been privileged enough to get a job with my family’s business. But even with insurance, 20% of my income last year was spent on health care costs.

 

Too profitable to cure?

The summer I returned from Guatemala, Diabetes Health Magazine ran a front page feature with the title

Would you cure a profitable disease? (http://www.diabeteshealth.com/read/2008/06/11/3162/would-you-cure-a-profitable-disease/)

The article posed the following question: If a cure did become a possibility, would anyone fund it if the reality was that it would eliminate a $132 billion industry?

In attempting to answer this question, I thought of myself.

From an economic standpoint, I am the perfect customer. Drug companies that sell insulin can charge nearly whatever they want; I have to buy it order to live. Without insulin, I will die…very quickly.

Diabetes (all types) is one of the most profitable diseases in the world. Because the disease itself isn’t an immediate threat – with proper treatment, it can be manageable – pharmaceutical companies can make more money because their buyers remain alive, consuming the products for their entire lives.

As a result, funding for projects in diabetes research goes toward improving treatments, not cures. The focus remains on making treatment more “comfortable” and reducing long-term complications. Many drug companies will put millions into the development of a different type of insulin that has already been made by another company just so they can have a complete “portfolio.” While tons of money is spent building blood meters that take 5 seconds instead of a 60, it doesn’t change the reality that I have to extract a drop of my own blood and use expensive blood tester strips multiple times per day.

checking insulin with a blood test1 300x300 I have a disease too profitable to cure

Glaucometer for measuring blood sugar

Why is this disease- a source of so much daily frustration and pain- being treated like a source of profit?

We have all been raised under the model of thought that if someone is smart enough to cure something or invent something to save lives, the world will bend over backwards to make it happen.

That is just not reality.

Reality goes something like this – the medical industry, supposedly responsible for healing and improving the lives of its patients, relieves its burden of responsibility by improving, rather than curing, a debilitating and life-threatening disease. It comes down to is lives like mine, where the following occurrences are common: absences on trips, frustration over how to pay never-ending bills, burnout, “dead-in-bed syndrome,” and depression.

I don’t believe that there is a direct conspiracy guiding the pharmaceutical/biomed industry. I don’t think that there needs to be one. On the contrary, I think that it seems so normal that no one ever questions it. It is a paradigm we are fed our whole lives, with enough of the truth packaged alongside the crazy that questioning the system seems silly. Enough new treatments and some effective drugs are produced so that overall, we are remain satisfied. Millions of amazing, good-hearted individuals dedicate their lives working within the research/biomed/pharma/medical industry.

No one ever asks why we are putting millions into developing a ‘me-too’ drug instead of a cure. Instead, Questions like “How do we answer to shareholders?” and “What are projects we can pursue to keep us competitive?”

There is no need for a group of truly evil people actively shaping a conspiracy when a system has been created that all that is needed to run it is to allow the greed, ignorance and apathy inside all of us to have free reign.

Instead of being a human being with a sickness, I have become a consumer
making a demand for a product, opening up new markets opportunities.

I get it. Coming up with a cure means you end the very institution you are being paid by. The FDA approval process is expensive. Research costs a lot of money (although companies spend twice as much on advertising than R&D)

There is not one person or one law to get angry at. It’s a huge, impersonal system where everyone points to everybody else and in the end, people like me fall through the cracks. Everyone has great excuses. But we must look beyond them and move toward solutions.

It’s time we ask the tough questions: Why are diseases treated as markets? What has happened to the spirit of healing in health care?

The systems now may be indirect, but the outcome is the same as if there was a direct conspiracy: Diseases are incentivized while cures are avoided. Results are freedom withheld.

As hard as it may be to understand that another way is possible, it is far more difficult to understand how we could not want another way: a view of health care centrally focused on the idea that human lives are sacred. Our health care and research system should be created around that, not generating profits that go into the pockets of a few people.

I have no problem with people making their living in this industry. But the way it is being done is destructive and we are smart enough to figure out a better way.

 

Dr. Denise Faustman

There is a researcher working on a cure for end-stage Type I Diabetes. But even though Dr. Denise Faustman cured the disease in mice in 2003, she has had trouble getting funding for her research.

Dr. Faustman is an Associate Professor of Medicine at Harvard Medical School with a MD/PhD. She is published in some of the most reputable journals, and is working with the number-two nationally-ranked hospital in the United States: Massachusetts General.

I have been following her research for eight years because she is one of the few people seeking to cure the immune system, not just the pancreas. She is using the generic drug BCG, to induce the immune system to make tumor- necrosis factor to destroy the T-cells that are killing the pancreas.

The majority of the funding for her worked ended up coming from the Iacocca foundation. Lee Iacocca, whose wife died of Type I Diabetes, is personally interested in funding a cure. If you’d like to know with the Juvenile Diabetes Research Foundation refused funding the research, read here: http://www.newsweek.com/blogs/lab-notes/2008/03/14/diabetes-of-mice-and-men.html

The results of Phase I clinical trials were announced in June 2011: It’s working. The details of the treatment are in the Drug Review from the journal Nature here: http://www.nature.com/nrd/journal/v9/n6/fig_tab/nrd3030_ft.html

Even as these positive results are being published, the frustration continues. A Boston Globe article written after the results were publicized last month says: “…when [Massachusetts General Hospital] went to the pharmaceutical industry looking for funding to research a pancreas-regenerating drug, “everyone said, ‘You’re reversing the disease. How are we going to make money?’ ’’. (http://articles.boston.com/2011-06-27/business/29709672_1_iacocca-family-foundation-diabetes-patients-pancreas)

After years of fundraising and positive research results, $25.2 million in funding is still needed for Phase II of her clinical trials.

How did we get to a point where there is $132 billion being spent on a disease (not including research funds), and there isn’t $25.5 million for funding a viable cure developed by a reputable scientist backed by major institutions?

This is a relevant discussion to have when we are still in a national debate over who is going to pay for health care. The debate has been so focused on who is going to bear the expense, while ignoring the issue that the costs would be too much of a burden either way if we continue to ignore how research, treatments, and cures are funded. Even if you use depersonalized economic terms to discuss healing, pursuing cures is fiscally responsible in the long-run.

 

Type I Diabetes is curable.

Whether the answer comes from Dr. Faustman or someone else, a cure exists. The systems where this research occurs must be healed, however, before those with the disease can be.

I continue to work in the area of global health. There are many excuses for why I could stop.  I’ve got an expensive, exhausting disease to manage. I’ve got another job. It really sucks to spend hours stuck at home planning an abroad program you can’t go on.

But I have found that my passion is stronger: I love healing. To me that means working through the excuses to see both people and systems healed. Hopefully, enough doctors and researchers will eventually feel the same way.





About the Author

Jessica Nicholas
Jessica Nicholas is one of the co-founders of a public health and youth empowerment nonprofit working in rural Guatemala. She supports her global health habit as an administrative assistant and freelance worker. She has a B.A. in international studies and a B.S. in biology from UC San Diego.




 
 

 
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7 Comments


  1. Aliza

    Very interesting. Really enjoyed reading this first-hand analysis and your eye-opening thoughts! Can’t wait for more.


  2. Kimberly

    This article hits the bullseye.


  3. Randy

    Great article. Well thought out and very well written. And a very brilliant description of Type 1 and what it means to have it. Keep it coming!!


  4. Rae

    Wonderful article. You have elegantly put into words what many of us believe. I have hope in Dr. Faustman and her research and thank goodness for the Iacocca foundation. I am appalled to hear that the JDRF refused to fund her.


  5. Suella Wolfe

    This article confirms what I have been saying for many years. It is a shame that the Federal government funds for diabetes have dried up for the most part while so much funding has gone toward find a cure for AIDS, which could be behaviorly controlled. I guess AIDS patients aren’t expected to live long enough to support an industry dedicated to controlling their disease rather than curing it.


  6. HumeBastich

    If the pharma companies have used the words “How will we make money?” in response to funding a cure, I do believe we dont need to worry about our sins in the afterlife – for Hell has already reached Earth!!



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