January 3, 2019

How To Access Innovative Therapies

Medical science has been rapidly advancing in recent decades and we can prove that with many examples: new therapies for diabetes, a vaccine for the prevention of cervical cancer, oral treatments for Hepatitis C curing more than 90% of the cases, the first Lupus drug in 50 years, personalized medicines to treat the most dangerous types of skin cancer, genome editing, immunotherapy eradicating cancer cells, and many many more. And we all remember AIDS and how it impacted millions of people worldwide. After the medical community became aware of the mysterious new plague, it took scientists just two years to identify it, understand how the virus spreads and suggest effective ways to slow down the epidemic. Within another ten years, new medicines turned AIDS from a death sentence into a chronic condition that no longer threatens one’s life.

Clinical Trials and Drug Development

“Why ten years”, you can ask. Well, this is the approximate time needed so scientists can evaluate the safety and efficacy of a certain new molecule or medical device and this is possible only thanks to clinical trials.

Clinical trials are an integral part of the drug development process: without them, modern therapies would never reach the ones in need. It is a way for patients to have an innovative treatment for free years before it is in the pharmacies or hospitals. Being tested on animals, healthy volunteers and then patients with a particular condition, a compound is potentially turned into a promising medicine that can change or even save one’s life. Even your smartwatch features tracking your daily activities have been proven in a clinical trial. 

The Study of The Human Genome

Ask scientists why they study the genome or try to connect the brain to a computer or try to create a mind inside a computer. Nine out of ten times you will get the same standard answer: we are doing it to cure diseases and save human lives. 

Doctors don’t just throw different chemicals into test tubes, hoping to chance upon some new medicine. With each passing year, doctors accumulate more and better knowledge, which they use in order to design more effective medicines and treatments. Currently, there are over 60 000 clinical trials worldwide exploring innovative approaches, procedures and drugs to prevent, treat, manage or cure a certain condition. 

The Bad News

The bad news here is that these innovative treatments could never come into reality if there aren’t enough people volunteering to take part in these research projects. What’s worse, 85% of people don’t know about clinical trials being a treatment option and how to access them.

And did you know that there are around 70 clinical trials for Dystonia worldwide currently being conducted? Researchers are exploring innovative botulinum toxin injections, observing the efficacy of Deep Brain Stimulation in the treatment of patients with this condition, determining the relationship between brain changes and genetic risk factors, investigating how the brain and motor behaviour changes with exercise training and many many more. It is important to mention that these patients are not alone and medical science is thinking actively in new solutions and hopefully cures some day.

FindMeCure Foundation Are Empowering Patients

This is why at FindMeCure Foundation we are empowering patient communities to learn how to find, understand and join clinical trials worldwide with just a few clicks. Together with Dystonia Europe, we have partnered to inform people living with dystonia about the options they have to access innovative therapies for this condition. Through a specially developed widget (here we should hyperlink the section where you have placed the widget), patients and caregivers have the option to directly get in touch with the medical teams running the study of interest and discuss whether this would be the right next step for them. The unique algorithm allows assessing trials on their safety and credibility and suggests trials relevant to patients’ needs and personal criteria.

Know All of Your Options

We should be aware that in the technological era we are now living, we have access to activities or technologies that break existing performance in a manner that expands the realm of the possible. When it comes to our own health, there are thousands of ways to live better and the first step is knowing all our options and make an informed decision after identifying their benefits and risks. 

We can’t avoid saying that the value of clinical trials participation is that we can help millions of people while helping ourselves. Medical science needs our input in order to keep advancing and creating miracles. This is why it is so important that patients are informed in the right way, at the right time. Information is everything but only if you know how to access it and how to benefit from all that!

Daniela Shikova
FindMeCure Foundation