Upgrades and Recommendations
June 30, 2008
In 2005 shortly after the tsunami, Dr. Martina Fuchs, met Madumekala, an adolescent girl suffering from panhypopituitarism. At age 11, Madu was the height of a three year old. In an unsupported gesture of compassion, Dr. Fuchs chose to fund Madu's treatment for growth hormone therapy through Ruhuna Medical College. While over the next two years as this program expanded to care for 5 children suffering from similar conditions, it was impossible to predict that this one act of compassion would initiate a country wide program to identify over 40 more children suffering from this type of congenital disorder and move a pharmaceutical distributor, A. Baurs Inc. LTD to negotiate with Serono, the manufacturer of the drug, the lowest price for growth hormone available in the global market today.
Photo: (L to R) Madu age 13; Sachini age 17; Gayan age 11; Fazeer age 12; Madura age 13
But even at this reduced price the cost of treatment is still 3-4 times the monthly income of the average Sri Lankan family. So in a gesture to secure funding from the Sri Lankan business community for the newly identified children in need of GH therapy, A. Baurs Inc. LTD had arranged for a symposium this May 14th 2008 in Columbo where Drs. from Sri Lanka's leading medical colleges, business leaders and all 45 children and their parents, over 120 in total, will convene to discuss the Real Medicine Growth Hormone Project.
Being the largest single sponsor for Sri Lankan children requiring growth hormone therapy, Real Medicine Foundation is at the center of attention at this gathering and we'll be making a short presentation on the importance of investing in people/human resources and discussing our program format.
It is hard to put to put a price or value on the dignity, hope and possibility that this program has made available to these children. And I won't even attempt to put into words what this program has meant to them. In the near future we’ll have posts from the children explain in their own words the impact of such support.
Together with the Ruhuna and A. Baurs staff we redesigned and streamlined our program to make the purchasing, delivery of medicine and assessment of the children more efficient and cost effective. Changes included quarterly purchasing and dispensing of the GH, decentralized re-constitution of the GH for dispensation, scheduled quarterly physicals and assessments.
Quarterly purchasing direct from A. Baurs reduces invoice generation from 24 (12x each company) to 4 for the entire year. The quarterly dispensation to the patient and the bi-monthly reconstitutions of the Growth Hormone done locally greatly reduces the patient's travel to receive injections and enhances their compliance to the treatment protocols.
Scheduled quarterly assessments for the children timed with quarterly purchases and dispensation synchronize all of the activities of the program such as physicals, statistics reporting, prescriptions etc. and bring together the administrators for interim reviews of the procedures surrounding the program activity. This again reduces the scheduling, travel time, etc.
While all of the progress and success of the program can paint an almost dream-like worry-free program, the reality remains that due to lack of funding, the program was halted for over two months and children did not receive any treatment during this time. Even the best efforts of Ruhuna Medical College, who continued to purchase GH even without payment from Real Medicine were not enough to keep the program going.
To maintain ethical integrity in this program by ensuring uninterrupted treatment for the children for the duration of the program, it is imperative that we secure funding a year in advance, or even better, 3 years. To understand the weight of this issue from the perspective of the children, please read Sachini's letter which she presented to me upon my first visit.
The costs associated with the program are approximately $200 per child per month or $2400 per child per year with the exception of Sachini. She is almost 17 and has a bone age of 10 years. It is imperative that she receives twice the Growth Hormone monthly to stimulate as much growth as possbile before her bone maturity age of 13 years old. Therefore her cost are $4800 per year. The combined total dollar amount for all the children for a year is approximately $14,400.
- To secure funding for the duration of the treatment for these children before sponsoring others which have been brought to our attention. (ie. Quarterly donations, Semi Annual and Annual contributions)
- Establish an investment fund in Sri Lanka that would earn up to 13-17% interest to ensure uninterrupted treatment and provide investment income to cover future expenses.
Please note that as a result of our recent discussions and investigations, and the work of A. Baurs, the cost of the growth hormone is less than 25% of the global market rate and we've reduced Tharindu's medication costs by almost 90%. Our program is the most cost effective possible to date.
Growth Hormone Meeting Summary:
The day commenced with reports from Sri Lanka's leading researchers in the field, who explained the nature of the conditions requiring treatment and the challenges faced by these young patients. Some of the challenges faced by these children and their families include the prohibitive costs associated with treatment and the stigma of their stunted growth. Professor Sujeewa, who has worked closely with Real Medicine Foundation and oversees our program, discussed the logistics of treatment and follow up and how reporting is done. Our program has provided a template to follow for others who wish to sponsor groups of children.
In addition to the growth hormone program arranged through Ruhuna Medical College, Real Medicine Foundation provides Lipid/Cholesterol lowering medication for a teenage boy named Tharindu. Tharindu and his sister lost their mother in the tsunami and their father abandoned them shortly thereafter. Looked after by their aunt and with the support of Real Medicine Foundation, he and his sister are able to live normal lives. Here Tharindu receives the next three months of his daily medication and his sister and aunt receive the monthly food supplies to support Tharindu's diet.
Emphasizing Whole Natural Foods, Nature's Real Medicine
In light of the negative impact of the Standard American Diet (SAD) on the overall health and wellbeing of the US, Real Medicine has modified its approach to food provision for the sponsored children and special outreach clinics.
Each month, Real Medicine provides some food to Madumekala and Tharindu. To encourage the idea that food is medicine and health starts with how we treat and nourish ourselves, we've included whole foods such as vegetables, nuts, seeds and dried fruits, natural sweeteners such as jaggery, organic non-GMO'd whole grain meals, and eliminated all foods containing refined sugar, food additives, colorings and preservatives, noodle packs containing MSG, baked goods containing hydrogenated oils, and have suggested limited use of the milk powders. We also made suggestions to limit the intake of candy, soda, cookies etc.
To further support our stance on a whole foods diet and inform our staff of the latest research coming from America on the indisputable link between nutrition and health, we provided the medical clinic with a copy of the DVD "Eating" by Mike Anderson, (www.ravediet.com) which documents the reversal of heart disease by four cardiologists who suffered heart attacks when they switched to a plant based diet. This ground breaking DVD also reviews the dramatic increase in heart disease and diabetes in America related to the Standard American Diet.”
Sri Lanka is being bombarded by messages to use fertilizers and pesticides and has already blindly accepted the western eating habits and its approach to manufacturing and preserving "foods" . Encouraging reliance on gardening, buying local and organic fruit and vegetables, and honoring traditional dietary and healing approaches is the best way to ensure a healthy Sri Lanka for the future.
On May 14th, 2008 business leaders and doctors from around Sri Lanka met to discuss the need to national sponsorship of children requiring Growth Hormone therapy. Members of Real Medicine Sri Lanka were invited to attend to share their experience with our program management to encourage greater participation by the business community.
The day commenced with reports from Sri Lanka's leading researchers in the field regarding who the nature of the conditions requiring treatment, the challenges faced by these young patients including the prohibitive costs associated with treatment and also discussed the logistics of treatment and follow up. Representatives from A. Baurs Inc. the supplier of the Growth Hormone in Sri Lanka were also on hand to provide information on the Saizen Growth Hormone.
Imagine having to decided on the quality of lifestyle for your entire family or the height of one of your children. This is the dilemma faced by many of the parents of children suffering from panhypopituitarism. whose annual income is often less than cost of one month of treatment. Imagine not being in a position to even make this choice.
Following the presentations, the parents and their children who need treatment gathered for a panel discussion with the doctors to have their questions answered about Growth Hormone treatment. Many parents became very emotional as they expressed feelings of hopelessness about never being able to afford to help their child. In general the questioning revolved around side affects and length of treatment.
While many of those in the business community invited did not attend, those who did, including the president of the Rotary Club, learned a great deal about the importance of this program. The Rotary has now offered to sponsor 10 children as a result. Additionally, the parents received encouragement from Professor Sujeewa to establish an association within Sri Lanka and to act as a group to solicit support from the government.
As a side bar note, I spoke with Dr. Shamya De Silva, a senior lecturer of Columbo University Medical College about her growing concern of the health of Sri Lanka's youth. We discussed the importance of preserving traditional healing approaches and encouraging the youth of the country to return to a simple, organically grown whole foods diet, take exercise and avoid processed, sugary food. We hope to collaborate in the future to bring this message to the general public.