Byline: Ann Brazeau, CEO & Founder
MPN Advocacy and Education International prides itself on bringing the experts to the MPN Community to ensure they are receiving accurate and updated information about clinical trials, treatment options, quality of life issues, and everything that could affect them medically. It also brings biopharmaceutical companies together with the researchers/clinicians at all of their programs in an effort to inform both physician and patient who is doing what in the laboratories around the world that could bring a new drug to commercialization for their use.
These three relationships are critical to new drug development. Our Industry Partners’ research and development teams work tirelessly in their labs to find answers to perplexing questions myeloproliferative neoplasms present. The MPN specialists who give so much of their time to speak at our programs, spend hours in their labs and also see patients throughout each day to understand the complexities of MPNs and how to best treat each patient, and many participate in heading trials at their academic and medical institutions. Patients participate and commit to lengthy clinical trials to help discover what works and what doesn’t. Without them, drugs would not be developed or approved. Drugs have to be tested for safety and efficacy in patients. There is no way around this fact. Hats off to those who volunteer to participate in clinical trials in hopes that the drug may one day benefit others who have the same condition as theirs. Participation in a clinical trial is a major contribution to our society.
This intricate connection is the key to so many discoveries that have saved lives, cured the common headache, stopped seizures, and cured some cancers. While preclinical research answers basic questions about a drug’s safety, it is not a substitute for studies of ways the drug will interact with the human body. People living with a chronic disease, like an MPN, benefit enormously from the pipeline of medications brought to market by hard-working clinical researchers who design and carry out clinical trials that show promise after testing in animals.
Education is critical to the success of clinical trials and participation. If physicians that treat you are not aware of the numerous trials currently underway, is it your responsibility to share what you know? We would say yes. Our programs for physicians that treat MPN patients always includes updates about current trials to be sure they are made aware of every single trial in the MPN space. This information coupled with site locations and trial criteria are essential to connecting the patient to a specific trial.
In this era of individualized treatment protocols and combination therapies, which will eventually be widespread in not only MPNs but other disease areas, it would be a shame to miss opportunities where potentially good therapies might fall off the grid for lack of trial participants and trial sites due to already strained programs. With the robust activity in MPNs currently, the challenges accompany the gains. Thus, the relationships among the three groups is even more important.
MPN Advocacy and Education International understands the challenges experienced by all three entities. Each plays an integral role in bringing new drugs to the shelves and ultimately to patients. Researchers who participate in trials and see patients can be overwhelmed. Patients may have financial issues that prohibit a commitment to a trial even if they want to participate. There are social and cultural factors that have historically left many trials with one demographic of participants, namely white, insured, and often retired.
The good news is organizations and our partners want to understand the challenges and want to help in all ways. In the seventeen years I’ve been working in MPNs, I am seeing the fruits of our advocating and educational efforts not only for patients, but in our relationships with biopharmaceutical companies and the hundreds of physicians who are not necessarily MPN specialists that see MPN patients. Our engagement and desire to grow a deeper understanding of the many challenges patients face has created a real interest in finding ways to close the gaps in areas of access, participation, education, and support.
Without collaboration and communication, the momentum needed for new drug development would quickly lose steam. MPN Advocacy and Education International remains committed to providing a platform for the dialogue necessary to keep the wheels in motion.
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