INTRODUCTION:

There are times in all of our lives where we face difficult decisions. Family problems, challenges at work or even daily traffic driving can be annoying. Some problems are easily solved while others force us to act against our own desires. For example, as parents we may find that we have to remove a broken piece of glass from our child’s foot while they scream and cry. We do not want to hurt our children but we must take care of the problem. Difficult choices, long term benefits.

As adults we must make choices for our own health care which demand the same difficult decision process. For example, we may have to force ourselves to agree to painful physical therapy for a broken back despite our desire to avoid this pain. We realize that we must face challenges to ensure our long term health. This principle applies to adults encountering growth hormone therapy.

As detailed in the ICOSEP report titled Education and Truth (icosep.org/resources/icosep-positions/), research has proven that growth hormone is essential to every cell in the human body. Symptoms of a deficiency may not appear as quickly as a broken bone, but the damage from this can be equally as damaging and costly if not treated.

BACKGROUND:

Growth hormone therapy became available in the 1950’s. It was given to patients via an injection given deep into the muscle 3 times per week. Thankfully, in 1987, research and injection advancements brought about the development of a daily shot which was administered just beneath the skin. This was a fantastic improvement and treatment compliance improved.

Throughout the initial years of therapy, studies proved that growth hormone was NOT only for the height of children. Studies revealed that growth hormone is crucial for heart, lung, bone and cellular health (just to name a few of the systems impacted). This incredible scientific discovery allowed growth hormone deficient adults to finally receive therapy and begin to heal their devastated health.

DAILY VERSUS WEEKLY THERAPY:

Today, patients are thankful that medical research in this field continues to progress. What started as a deep, painful injection has now reached the point there are options for injection devices, and frequency of shots. No longer it is necessary to take a shot every day as weekly options have proved safe and effective. Parents of affected children can avoid nightly fights. And adults can commit more readily to a once per week injection. No more excuses. Just once a week and healthy!

Why is it important to avail weekly treatments instead of daily injections if the results are the same?

The answer can be summed up with one word- compliance. But to thoroughly consider this, and to be matter of fact, if it were your choice, what option would you choose? Daily or weekly?

[For those reading this paper who want data on this area topic we tried to provide specific endocrine studies. However, there is no to data currently, as the medication is only recently available. However, in consideration of human nature, we have included study results which are applicable for consideration.]

The easiest marker for growth hormone therapy is in children, because their physical growth can be seen. However, height is only one symptom of growth hormone deficiency. The crucial systems of heart strength, lung strength and bone are also seriously affected! Therefore, realizing study results such as:

“The present study demonstrates for the first time that missing more than one GH dose a week can compromise longitudinal growth. Importantly, we showed a continuous relationship between missed doses and growth.” (1)

Is even more important. If physical height is being compromised by poor treatment compliance…how much damage to those other systems is occurring? Growth hormone deficiency is a steady, quiet destruction once the visual marker of height is no longer available.

Current guidelines issued in 2014 by the American Thyroid Association say weekly dosing can be considered if a patient has compliance issues. (2) Endocrine issues are quiet and subtle until the damage is truly severe. It is because of this lack of immediate “visual” damage that people such as thyroid patients who only need to take pills, often miss the value until problems are severe.

And finally, in Copenhagen, Denmark – October 4, 2013 – the “Results of a large survey of patients with multiple sclerosis (MS) undergoing disease-modifying therapy (DMT)” were detailed. They reported that “Dosing Frequency a Prime Factor in Non-Adherence to Disease”.

“In subjects on an injectable DMT regimen, injection frequency was the major determinant of non-adherence”. The “findings underscored the urgent need for new treatment options that are more convenient to administer, longer-lasting, and require fewer doses to remember in order to increase compliance”. (3)

SUMMARY

Managing uncomfortable medical tasks are much easier to comply with if the frequency is diminished.

We are very grateful for continued medical advancements for endocrine patients. The safe and effective once weekly injections are important factor for the lifelong healthcare of endocrine patients. One aspect of this is best summarized in the article, Childhood cancer survivors require lifelong vigilance for late endocrinopathies [2019] a recent publication by Wassim Chemaitilly, MD.

We are encouraged that with these improvements and continued research the lifelong good health of affected individuals can finally be realized.

Jamie Harvey Mary AndrewsChief Executive Officer Chief Executive OfficerICOSEP (International Coalition of Organizations The MAGIC FoundationSupporting Endocrine Patients) (Parent Organization of ICOSEP)Global United States

Jenny Child Shyam NairExecutive Director, Child Growth Foundation Chairman, MAGIC-India TrustUnited Kingdom India

Cinzia Sacchetti Olga DavidociPresident, A.Fa.D.O.C. Executive Director, HORASTItaly Serbia

Béatrice Demaret Daniela DippoldPresident, Grandir President, GSHVFrance Germany

Zsuzsanna Liebold Aleksandar PetrovskiICOSEP Ambassador Director President, PACT & ICOSEPGermany Macedonia

Joanna SirakICOSEP AmbassadorPoland

Resources:

1. Growth Hormone Treatment journals.plos.org/plosone/article?id=10.1371/journal.pone.00162232. Thyroid Association endocrineweb.com/news/parathyroid-diseases/22344-levothyroxine-sluggish-thyroids-weekly-daily3. Dosing mdmag.com/conference-coverage/2013-ectrims/dosing-frequency-a-prime-factor-in-non- adherence-to-disease-modifying-therapy-in-patients-with-multiple-sclerosis4. https://www.healio.com/endocrinology/diabetes/news/print/endocrine-today/%7B89d90314-5ca7-4518-ae29-ac21b96448bc%7D/childhood-cancer-survivors-require-lifelong-vigilance-for-late-endocrinopathies