Do you know the saying "union makes strength"? With patient associations, this maximum is very true. The associations are formed by people who have the same goal: generally improve the quality of life of those who go through a certain disease, or seek cutting-edge treatments to treat it.
Remedies with fewer side effects, cutting-edge medications, innovative treatments: All this ends up getting more quickly to the ears of an NGO interested in the subject. "Generally, diseases such as cancer or neurological pathologies such as multiple sclerosis, ELA or Parkinson have strong associations," explains Ana Elisa Miller, director of clinical management of PPD and institutional director of Abracro.
Rare diseases: there is hope
In the case of rare diseases, which affect 65 people in 100,000, the treatments are very difficult. They are usually incurable diseases, which affect the person since childhood, with expensive treatments. In these cases, the entities increasingly strengthen and conquer therapies and improvements in the nutritional part that make the difference in their lives.
How to get access to cutting-edge medications?
What few people remember is that clinical research can be a very important route to be traced. "The drugs under study are a hope. Both to benefit from a new treatment and to benefit future generations, "says Ana Elisa. These are remedies that can save lives or improve the quality of life of those who have a disease.
How it works in practice
There are several associations of patients, usually named by the disease – oncoguide, for example, is aimed at patients with cancer, and rare lives directed to those who have rare disease. "When we have very specific studies, we have contacted these associations. Some already disclose studies in their sites, so that patients undergo ".
The role of the NGO is to bring patient closer to these innovative therapies. "They have an important role, of raising awareness and demystifying what is a clinical study for many people," says Ana.
Thus, if the patient is within the criteria required by the study, he/she has access to very advanced medications. "The mission of the associations is to ensure the best quality of life, give access to the best treatments and legally support the patients. Therefore, the association has only to gain from this partnership, "says Ana Elisa.
Since it is approved to participate in a clinical research, the patient goes through care superior to the normally offered to the population. Starting with the selected hospitals, the patient receives cutting-edge treatment, quality exams – Many of them are analyzed outside the country, with total agility, since the pharmaceutical industry pays for all this. Away from queues, the patient also has direct access to the physician at all times.
What if the study is canceled?
It is fact: There are clinical studies canceled at times in half the process. "In this case, the patient helps future generations, the good of science," says Ana Elisa.
Safety of clinical Research
If you have questions about the safety of a survey, you can rest assured. When a drug arrives at the research phase, it has undergone several previous experiments and has been filtered by documentation, analyzed by organs such as CONEP and Anvisa. Sometimes even by foreign organs like FDA. "With all the data we have in our hands, it's very safe," says Ana Elisa.