thestoryofmeaningfuluse

A Magazine Capturing the Story of Health- For People, Environment, Economy & Habitat

The Economy of Health – Will it Ever Become Sustainable?

Post 1 of a new series on Capacity Building for Health

Building future value that sustains, is an act of building capacity.  So far in all aspects of my life personally and professionally, I have been unable to find any real scale measures through research that show me that somewhere in the world there is a group of people who want to build future value for health that sustains.

The kind of capacity building I have done in the past was easier to do than today. It often involved one organization, one politic and people I knew that I had credibility with immediately.

Over the last 3 decades; if not longer, it has become impossible to deal with one group of economic decision-makers from one institution (board). Everything in health is so complicated it requires an approach of multiple disciplines and a community of people who say at the get go, they are going to get this new treatment or technology to work for the patient at the lowest cost for the best practice.

I even have a road map of what that now looks like that can be obtained from me for people interested in putting the road map to work in a productive form.

In the hospital sector, when a new form of treatment is discovered, the pattern of adoption often gets lost in the trappings and bureaucracy of  a purchase and sale/bid process.  If the cost of equipment, facility and more results in a budget for capital expenditures than this process has to  integrate with raising money (investment or donor), building buildings and developing new real estate.

This does not even work its way into a plan on how to staff, introduce, communicate and define a quality assurance program.

I don’t know how often a hospital approaches these matters with a task force that includes patients, representation from all staff categories, manufacturers of equipment, suppliers and all who represent very step of the process. The other question I have is if a hospital based group drives the project who do they include from the community to let the project take form without the domination of the hospital view and expertise, so innovation in practice can occur.

In todays’ fast pace world most of the time the different players and experts engaged in innovating the change, don’t even meet each other as they get processed through the institutional policy and decision making process.

The first stage of research I used to do with people I know within one company now requires building cooperation between organizations with conflicting cultures.  It can involve government; last week,  I questioned the capacity of government in any country  to build future value.

During a second stage, I organize an understanding of the full-scale of research that stands behind a disease (academic, patient advocacy, and more) regarding the  treatment and the part often forgotten, the cure. CSRwire Talkback hosted 3 of my posts where I began to look at the financial issues that stood behind the merger and acquisition of Genzyme by Sanofi Aventis.  From the Wall Street view or tradition of business analysts this was looked initially like a “hostile take over”.

Genzyme tried to go to the bank on the value of a drug for MS patients that is has not yet gone to market;  7 Wall Street Analysts, Genzyme and Sanofi Aventis were not even close on their analysis of value which spanned from $370M up to Genzyme’s projection of $3.5B.  Yet from my particular discipline of accelerate action research, I updated myself on the results of the Myelin Repair Foundation.

I discovered from the Myelin Repair Foundation that researching for a cure now cost up to $1B. It made me wonder about all those dollars raised for small investigations and research grants of $5-10K in size that do not assure a substantial enough sampling that can impact treatment, let alone a cure.  How much money very year goes to campaigns by advocacy groups to fund media, events and build awareness for a need that is recognized globally.

Like numerous other hubs of capacity building that I have studied, the Myelin Repair Foundation in its dedication to finding a cure for Multiple Sclerosis, has pulled together a format of accelerated research that no pharmaceutical company, medical school or government institution can do on its own with a result over 6 years that organized a matching fund raising campaign of $80M, of which $40M came from 4 medical school partners.

The result was true to the form of what capacity building provides; it could not be predicted and instead of just sourcing value for the “cure and treatment of MS,” alone, it has produced research of value to 70 other diseases that are influence by harm to the Myelin Sheeth.  And if you don’t click on this link for the complete story, you are going to miss out on all the other results.

The Breast Cancer US Postal Stamp has raised since 1998 over $72M in funds for research. Almost 3/4 of the way to the billion for the cure.  So while a mechanism for fundraising over 13 years has raised $72M, it was not raised in the context of assuring accelerated collaborative research which is a relatively new practice.

Fast rewind to 1995 or earlier , when Betsy Mullen, a Breast Cancer survivor transformed into a health navigator, coach and advocate as part of her recover. Betsy was committed to doing what she could to create the funds and research that could find the cure for breast cancer.

Yet as a volunteer working the tradition of the US government system with good reason to make a difference, Betsy risked her health and invested in lobbying as an advocate that formed an investment in legislation for campaign and passage.

Betsy achieved her dream; she insured funds were raised for research that can lead to a cure of breast cancer and help the millions who have had the disease, make a difference for those who died and impact treatment with more positive outcomes for future patients and reduce the numbers of those who suffer from this diseases.

Through Betsy’s hard work as a volunteer, she built a partnership with United States Senator Dianne Feinstein, Congressman Vic Fazio, Congresswoman Susan Molinari, and others, secured passage of the Stamp out Breast Cancer Act in July 1997 and issuance of the historic Breast Cancer Research Semi-postal Stamp in July 1998.

Senator Feinstein’s assures legislative work required to keep this stamp in its fund raising mode.  Betsy explains at a Facebook Page telling the story of the stamp,

The Breast Cancer Research Stamp is the first postage stamp of its kind in United States history dedicated to raising funds for a special cause. This historic stamp designed to save lives was first issued 12 years ago. Since the stamp was first issued through November 2010, the United States Postal Service has sold more than 903 million stamps, raising approximately $72 million thus far for breast cancer research. The stamp currently costs 55-cents and is deemed valid as a 44-cent first-class stamp. The additional 11-cents charged for each stamp is directed to research programs at the National Institutes for Health, which receives 70% of the net proceeds, and the Department of Defense breast cancer research programs, which receive the remaining 30% of the net proceeds.

Imagine what might have come about if the funds raised to to government agencies .  What is the potential of change in how these funds are directed int he future?  Can the US Federal Government organize an accelerated research effort, like what has been modeled by The Myelin Repair Foundation.

Imagine if Betsy did not have to do a day job to fund her volunteer effort and was able to facilitate translation of these funds in use, e.g. Scott Johnson, MS patient and President and Founder of the Myelin Foundation?

Look for my column tomorrow on a new treatment possibility- its description, its known benefits and current obstacles. The treatment is called Proton Radiation Therapy and it is has, especially for children is an amazing treatment format for the treatment of brain tumors and more.  There are only 29 facilities that offer this treatment globally and I have become a protagonist and self selected capacity builder of this treatment. Why?

I believe organizing the capacity for this treatment globally will translate to a new format of health that is sustainable, accessible and innovative and requires input and collaboration of all sectors.

Stay tuned,

Lavinia Weissman

Publisher

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6 Comments»

  David Taylor wrote @

You need to recognise two things about the pharmaceutical industry : first its nade up of two parts. There are the big Pharma companies that everyone now loves to hate like Pfizer and Sanofi, these are R&D based organisations that bring all new drugs to the market. Most drugs taken by patients (in quantity rather than value terms) are produced by little known companies like Teva which are manufacturing based. They do little if any R&D and do not need a sales force becasue they are selling established products based on price.

The second thing to appreciate is perhaps counter intuitive. Although the big pharma companies are always perceived as research companies their R&D is dominated by the D component. The core competency of companies like Pfizer is in translating a conceptual advance in pharmacology into a tablet that can be safely ingested by millions of patients. This sounds trivial but in fact is where 95% of the $1b investment goes to create a new drug. You also need to recognise that at that point, when millions of dollars are being committed, 9 out of 10 of all molecules in development fail to make it to the patient and thus earn no revenue for the company.

The reason for the wild discrepancy in the value put on Genzyme by the various parties was about just this issue. IF the Genzyme key product made it all the way to market then the $3.5b valuation would have been true, BUT at the time of the merger the product stood a 90% chance of not getting to market which valued Genzyme at a much lower price. The variation in valuation had nothing to do with how sustainable people thought the company was but different perceptions of risk between the buyer and seller.

The research effort which leads to the development stage comes from many sources and the industry is just one of many. AS you point out with the Myelin Group, the basic research may lead to advances in many different areas and serendipity has been the basis of many of the major drugs that we see in use today.

Sustainable health care is NOT about the Pharma companies, they have a very useful and socially beneficial business in selling pharmacological solutions. Sustainable Health Care is much, much broader and is about sustaining health and wellbeing not treating disease and illness caused by following unhealthy lifestyles. Statins are the sticking plaster to reduce the high cholesterol that you acquired by eating unhealthily. Thus the sustainable solution to high cholesterol is education wrt diet not prescription of a statin.

[…] easily available is when a child and his family often turn into evangelical health advocates.  In Part 1 to this series, I told the story of how Betsy Mullen, Breast Cancer Survivor and Scott Johnson, MS Patient turned […]

  Caryn Isaacs wrote @

Not everyone has the luxury of getting a hot disease, like the one’s that most Patient Navigator programs and meaningful use policies target. We’re always surprised to heat about someone like Dr. Richard Daines, the state Commissioner of Health during the Paterson administration from 2007-2010, who died of a heart attack at age 60.
“Dr. Daines left a legacy as a fervent supporter of the public health of New Yorkers—whether or not New Yorkers wanted to grapple with their obesity, smoking habits and soda addictions. He championed the fight for a tax on sugary beverages, taking to You Tube to graphically educate New Yorkers about the dangers of obesity and the empty calories in soda.” Barbara Benson CrainsNYBusiness.com

The reality is that most people don’t choose to live an unhealthy lifestyle. They are just doing the best they can and if a pill can help, then maybe that is a stepping stone to allowing the person to focus on moving towards a healthier lifestyle. When the disease has nothing to do with lifestyle, then shouldn’t we find cures? If we only focus on blame, would we have moved for research to stop polio?

  David Taylor wrote @

This is not a bimodal issue i.e. it is not to say that sustainable health is only about lifestyle, but euqlly it is not only about drugs. To get to sustainable health requires BOTH. There is no blame involved but infectious diseases like cholera can be managed to a large degree by better hygiene and sanitation, HIV-AIDS by sensible sexual practices. We need to beware of the “pill for every ill” syndrome, and also alert for the synthetic disease that can be cured by a magic pill. However there will always be a need for medical intervention in disease, cancer, dementia and pain relief.

  thestoryofmeaningfuluse wrote @

@DavidTaylor your intellect is always welcome here, whether I agree or disagree. I fear commentary in a magazine does not lend itself to the kinds of conversations we each developed our own energy here.

The hidden assumptions most simple to reveal here for my readers is that David’s work is in the pharmaceutical industry, while Caryn as a very skilled practice leader and nurse, focuses on delivery of care and perceives her view as both an advocate, caregiver and experience in the world of health care delivery.

You cannot foster sustainable value unless you bring all the voices into the room and include everyone and build a bridge between the observers, the researchers and people @ the line.

[…] mentioned serve to validate the level of complexity, I suggested in in Post 1 of this series, Capacity Building for Health. Review of these articles provide an introductory understanding of what  any patient and family is […]


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