Opinion paper as agreed to by the member organizations of the International Coalition of Organizations Supporting Endocrine Patients ICOSEP

Medical research clearly defines the risks, benefits and effectiveness for all types of medical treatments.

Each country has a system which determines what procedures, treatments and products are approved for coverage (payment). Some ICOSEP member countries have systems funded strictly by their government authority. Other countries have a combination of government and private funding. Regardless of the type of coverage, each system has positive and negative aspects.

ICOSEP leaders are keenly focused on working within individual country systems to encourage governments and private parties to ensure the best quality of care for all endocrine patients. This is particularly important as many ICOSEP leaders represent adults and children throughout the world.

A global trend which of alarm to ICOSEP members concerns their reports that; government and private “payers” are negotiating allowable medical care with companies with greater frequency and private care intrusion, rather than giving physicians the authority to deliver the best care he/she can based on their skills and expertise.

As patient leaders, this trend is highly concerning. When did governmental officials (or a generic doctor representing a payer entity) become more of a healthcare expert as compared to the physician specialists who have spent a lifetime, working with patients, and seeing first hand what works for that individual?

To put this concern into a simple example: If a cancer patient does not respond well to one type of treatment, doctors would want to try another product. The second product or treatment may be similar to the first treatment but because we are all unique, we may respond better to the other product.  The option for the physician to choose what is best for each of us is crucial to good health care.

The growing trend of governments and payers to assign what a physician can and cannot use as a treatment for a patient is alarming. If your child has a brain tumor, wouldn’t you want every option available for him to choose the best path for your child? Of course you would, we all would. So why do we conform to restrictions in any areas of our medical care?

There are mountains of legal documents in all countries, with definitions of one medical term or treatment and reviews. This quagmire of legal “stuff” is intended as a protection for patient care. However, the interference in our medical care has gone beyond protection. In many areas, restrictions have now reached the point where governments and payers are now dictating patient care rather than physicians. Therefore, the health benefits and options for the best treatments and care for children appears to no longer be the priority.

As medical discoveries and developments are ever changing, it is essential that the systems by which we depend to get our medical care is equally flexible. There is no better example that in today’s rapid scramble for a cure of COVID19. And because the endocrine system is essential for the immune system, it is now more than ever, crucial for doctors to have full authority to choose products, treatments, and options for each patients’ unique health care.

It is the consensus of ICOSEP members that governments and all medical payers facilitate and encourage medical professionals the right to choose the best treatment options for their patients.

Jamie Harvey, CEO ICOSEP

Zsuzsanna Leibold, Ambassador-Germany
Mary Andrews, CEO, MAGIC Foundation, USA
Jenny Child, Director, Child Growth Foundation, UK
Olga Davidocic, Director, HORAST, Serbia
Aleksandar Petrovski, President, PACT, Macedonia
Peter Coopman, Grandir, France
Deepa & Shyam Nair , Co-founders, MAGIC-India
Agnieszka Walczak, President, Turner Syn. Society, Poland
Riziki Syombua, President, MAGIC-Africa
Daniela Dippold, President, BSHV, Germany
Diana Vitali, President, SOD ITALIA, Italy
Cindy Scurlock, President, Turner Syndrome Soc., USA
Arlene Smythe, President, Turner Syn. Support Society, UK
Denise Culin, Founder, Turner Syn. Global Alliance
Cinzia Sacchetti, President, AFaDOC, Italy
Estafania Gonzalez, Fundación, ALPE Acondroplasia, Spain
Claudie Samuel, President AFIF, France
David Breshears, President, LPOTW, USA



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