thestoryofmeaningfuluse

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

When Women Chose to Make a Difference to the Treatment of Childhood Brain Tumors

Post 3 of this series – Capacity Building for Health

Most patients of life threatening illness, whether they live or die, dream for a future when the cure is found!

As I completed the series on the Sanofi-Aventis acquisition of Genzyme, after I completed my analysis of whether or not this was a “hostile take over,” and “On what basis was Genzyme being financially valued?”  I asked the question, “What about the patient?”

This  story-capture demonstrated to me one more time, that  the patient driver for most is best described as ” learning to live without a cure and hoping that there is a possible cure.”

Most patients diagnosed with a life threatening illness, join advocacy movements promising a cure. Overtime they vest their family and friends in these advocacy movements of fund raising and building awareness for the “cure.”

When Scott Johnson, President of the Myelin Foundation was diagnosed with multiple sclerosis (first diagnosed 150 years ago) at Age 20, he recognized there was a greater need to reorganize scientific research by organizing the end in mind and used this as an organizing principle.

Scott created a non-profit accelerator, The Myelin Repair Foundation with the primary purpose to build a collaboration of people to think holistically; and search for a treatment or a cure, which requires a very different focus than investment in small research project permits.  The gap between the small studies and an a holistic approach is described as “the valley of death.”

To leap and accelerate beyond the valley of death requires a steep investment in research for a cure which is likely to cost $1B. The Myelin Repair Foundation offres that is this video. in which summarizes how the foundation organized to conduct research and raise an investment of $80M how to accelerate in 7 years time toward this goal. The site also provides updates from Scott.

These audio and test reports provide a complete summary of how moving  Scott led an organization into a format of  accelerated collaboration for the to assure that funds raised for research were directed to defining the best possible treatments and potential cure.

So what does it mean when two women decide to take on a goal of improving care and finding a cure for children and their families looking to heal and recover from childhood brain tumors?

Companies, e.g. Dow Chemical, non-governmental organizations e.g. AAUW and the UN Gender Equality Program, have made this year a year to accelerate the agenda to insure women can move ahead and have greater impact with regard to science and hence in my view sustainability.

Elaine Cohen offered a recent report on how more women fix-its will not work. Within the report, Elaine described that  the challenge of moving beyond superficial EAP (employee assistance programs) and mother friendly programs as superficial and not really getting to the heart of the matter as to how women can successfully accelerate their careers and contributions.

I have always ascertained since working years ago as health care program manager and clinical management leader, that the glass ceiling is not addressing an issue of societal scale that harm health, e.g.  sleep deprivation, chemical and environmental exposures.

This has led to a surge in the US since 9/11 that has resulted in 1 out of 3 people being diagnosed with a chronic or life threatening illness.  With the Presidents Report on Cancer, issued in 2010, Nicholas Kristoff wrote

The report blames weak laws, lax enforcement and fragmented authority, as well as the existing regulatory presumption that chemicals are safe unless strong evidence emerges to the contrary.

Any intelligent woman knows that this also implies a great impact on a woman’s capacity to deliver a child in perfect health and serve the role of family caregiver to children and elders, whether health or ill.  There are other complications that have resulted in a growing occurrence of children with birth defects and cancer.

In the early 1990’s, my writing began to address the question of the societal impact of women accelerated entrance into the workforce and the growing reliance on two income households.  I then asked the question what implications did this have on caregiving.  By the late 90’s,  Peter Arno, Albert Einstein Medical Researcher has measured a niche of unpaid care giving to represent $306M annually in unpaid wages.

Early in the 2000’s, the Collaboration for Health and Environment was formed and assessed the cost of disease (chronic illness) for the 100M Americans afflicted with diseases, e.g. Parkinson Disease, MS, Infertility, birth defects, developmental disabilities, cancer and autism exceeds $325B per year in the chaotic array of systems of health care delivery and lost productivity.

All these websites and publications 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 now having to navigate when someone is being diagnosed or treated for illness.

In this context,  Christina and I began to identify a list of tasks to include as part of devising a strategy of how to create a global community that accelerates access and treatment and a cure for children who have cancerous brain tumors.   The words “examine” and “include” give a clear idea of how we postured our conversation in which we were intent to learn how to translate into the best possible practice.

This is a different behavior than what the tradition of organization behavior has been based on the core group economic decision making practices of commercial business, government agencies and non-governmental advocacy groups that drive prescriptive practices and decision making process based on return of investment specific to ta sector.

Commercial interests are looking for a high rate of return on cash investment, government agencies are driven by the expense of serving a bureaucracy and employment system not based on merit or saving the tax payers money by eliminating jobs and looking to the market for alternative solutions to develop.

The tradition of non-governmental organizations has been to protest business as greedy and the cause of problems, which is true and not true and view government as not authoring the right forms of legislation that take a long time to author and pass while corporations invest in a tradition of lobbying for profit.

Christina and I began our conversation listing out some ideas about how to convene a global community in support of a country culture specific initiative

First, we  brainstormed a list of who to talk to; our shared list involved speaking to a local scientist; inventor in Brazil to understand the issues and cost of building equipment from scratch or purchasing abroad.

We both understood the implications of the size of investment to build equipment to provide proton beam radiation therapy and why that implied that the equipment in this early stage of treatment discovery was estimated to cost $350M.   With 28 installations around the world, was it possible to develop this equipment now to be more efficient and lower in cost?

Next on our list was a need to  identify a community of patients and their parents who have been through this kind of treatment and establishing need. What is are the implications for children, who go through this treatment and what really has to be defined for ongoing followup both for the care and development of the child and continued research into the practice for continuous improvement?

We will most likely follow this by identifying participation from credentialed clinicians who represent a series of institutions that shape the entire care-giving landscape for a child suffering from a brain tumor, including the people who teach these children at school.

By the end of our conversation, we mapped out a plan for speculation and who to involve and agreed to a time for our next conversation.  If you represent a country of care and any of these groups mentioned, and want to join in our project, please be in touch with me.

We know we can impact care for children if we form this as an activity to learn how to form future value for the most precious citizen of any sustainable economy, a child.

If you want to watch two women accelerate  potential for contribution,  watch Christina and myself as we work. It is clear to me that I want to create a global inclusive project outside the boundaries of tradition institutions, where we can factor in our personal need for self-care as we convene with others to shape a project into practical steps of achievement for milestones that build into lasting social impact.

If women know they can care for themselves and hence their families (elders, loved ones and children) that is a very excellent beginning to welcoming their investment in accelerating change in the world and impacting cultures of work, native origin and country.

This project is one of the best ways to examine how women work, adapt to an illness of their child and oversee as caregiver all aspects of the child’s life influenced by the disease, treatment and possible cure.

This certainly makes for a mix in recognizing a wonderful new pattern of work through which women can succed and be respected.  This pattern will honor  women as leaders, collaborators and the way they respect their own diversity  and that of others for the greatest good. Don’t you think?

Best,

Lavinia Weissman

Publisher

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2 Comments»

  Jan Morgan wrote @

wonderful piece, women do accelerate change in the world – thank you for publishing. Jan

  Lazy boy wrote @

I was lucky to find this thestoryofmeaningfuluse.com site. Thank you for sharing your talent and the information you provide. You are a bright light!


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