NORD’s Educational Initiatives team spoke with Alexander Pham, a Massachusetts College of Pharmacy and Health Sciences student and NORD Students for Rare Chapter Leader. In this interview, Alexander talks about his desire to get involved in the rare disease community.
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Tell us a little bit about yourself! Where are you from?
I am from Haverhill, Massachusetts.
Where did you attend undergrad and what did you study? Where are you now and what are you studying?
Right after high school, I attended Rochester Institute of Technology majoring in computer engineering for a short while and then switched to electrical engineering. After 2 years at RIT, I decided that engineering was not a passion of mine, and I looked for a career in healthcare. That led me to Massachusetts College of Pharmacy and Health Sciences in Boston, MA to pursue a Doctor of Pharmacy degree in their 6-year program. I am now in my sixth and final year of pharmacy school.
Where did your interest in rare diseases come from?
My interest in rare diseases started when I became a member of the first e-board of the NORD Student Chapter at MCPHS-Boston. Being part of the student chapter opened my eyes to a side of healthcare and pharmacy that I wasn’t aware of because rare diseases are not a huge focus of the pharmacy curriculum.
Why did you decide to join a NORD Chapter?
I joined a NORD Student Chapter because I wanted a new experience and hoped to make an impact. The door was really opened to me when a friend of mine, Jordan Haines, asked me if I wanted to be part of the first e-board of the NORD student chapter that she was starting on campus. The following year, I became the president of the student chapter after Jordan graduated and passed the torch to me.
What do you hope to do in your career relating to rare disease?
I would like to go into the pharmaceutical industry, where I can be more involved with treatments for rare diseases. By having a hand in the process to get new drugs for rare diseases to the people that need them, I would be able to impact so many lives.
What do you see as the biggest challenge for rare patients in regards to pharmacy?
The biggest challenge that rare disease patients have regarding pharmacy is feasible and efficient drug access. There are a lot of factors that make this difficult. There are no drugs on the market for many rare diseases, and when there are approved drugs, they are usually expensive and difficult for patients to afford. The high cost of drugs for rare diseases also makes insurance companies more reluctant to cover their costs. Furthermore, if insurance does cover them, more than likely they will require “prior authorizations” to make sure that drug utilization is appropriate, and that may result in a lapse of treatment when a patient cannot get a new prescription or refill due to the pending processing of the prior authorization.
What would you say to other students who are interested in rare diseases?
Though they are called rare diseases, they affect more Americans than you think, and there is a good chance that you will encounter someone with a rare disease in your career in the healthcare field. Learn about rare diseases and make an impact in the lives of millions of Americans!
What have you learned during your time interacting and working with NORD?
I have spent a couple of years with the NORD Student Chapter at MCPHS and 6 weeks at NORD for a pharmacy rotation. I learned that even though we are making progress in the rare disease space, there is still a lot we have to do to improve the lives of many. Every little bit that we do helps, whether it is by providing updated information or educating others. The most significant thing I learned is that people look toward NORD and supporting patient organizations for hope, and that is something that makes our work more than worthwhile.
