October 22, 2015

Pharma AND Patients?

I know what you're thinking! Pharma AND Patients? Wait, on the same team...what!?

My Patient Story via Collage at the GSK Lupus Summit

Yes, that's exactly what happened this past May during Lupus Awareness Month in Philadelphia. A group of Lupus Patients and bloggers were invited to GSK (GlaxosmithKline) headquarters to discuss how we can collaborate to help improve patient lives. You may be familiar with GSK because they are the pharmaceutical company responsible for creating the 1st Lupus treatment in over 50 years, Benlysta.
Just to clarify, GSK did not endorse me to write this post. They graciously provided transportation/lodging for me to attend the GSK Lupus Summit and the views I share with you here are 100% unbiased and my own personal opinion.
 This was the 1st time I'd ever heard of a prominent Pharmaceutical company reaching out to actual patients to learn more about the disease they are living with daily in order to learn how to NOT only humanize their brand but FILL the needs that PATIENTS deem most important.

When the process of developing new medications or vaccines takes over 15 years and well over a million dollars it's time to find a NEW approach to help those that need it most. That's where partnerships come in! I'm beyond thrilled to learn that GSK is teaming up with multiple organizations such as charities, universities, and even the government to find better solutions in health care. Besides aspiring to be a leader for lupus they are on the quest to improve the reputation of pharma. With over two dozen current clinical trials for lupus covering areas such as pregnancy and nephritis I'd say they are already well on their way. If a Pharmaceutical company is going to claim, "We want to focus on patient outcomes and NOT prescriptions!" they'd very well better have the visible data to prove it!

Info-graphic from 2011 Lupus Survey results
by Human Genome Sciences & GSK 
I must admit that when I first received the invitation to the GSK Lupus Summit my thoughts back-tracked to much darker times of shady encounters of drug representatives schmoozing the receptionist at the office of one of my old rheumatologists only to be handed endless sample packs of a medication that "can help" once I finally made it inside their office. Sadly I'm not the only one who's had a less than savory experience with pharma. I hear horrid stories all the time, so it's a nice change of pace to finally hear some good ones and even develop positive relationships that are helping to change the mindset from negative to positive.

Wondering why NOW a pharma company is reaching out to those living with lupus? Simple. The stats are in and the results show that there is a severe lack of resources for those with lupus. Patients are NOT telling their doctors OR family members how they are truly feeling which is resulting in major miscommunication between all those involved but WHY is this happening? Also simple. Many of those living with lupus have expressed that when discussing their pain or concerns with how lupus is affecting their bodies they are often met with annoyance, disbelief, and are often called lazy, crazy, or hypochondriacs sometimes by their friends, family, and shockingly in some cases their physicians. This is one of the primary reasons that those diagnosed with lupus don't like to discuss it publicly. There is so much mystery and stigma surrounding lupus because it is an illness that damages the body internally which is not always visible to the naked eye which leads many to mistakenly assume it isn't seriously debilitating or life threatening. This couldn't be farther from the truth. About two months ago both my rheumatologist and nephrologist expressed concerned and sent me for a kidney biopsy. A week after it was confirmed. Lupus is aggressively attacking my kidneys. According to the NIH about up to 60% of patients with SLE will develop Lupus Nephritis which can lead to serious health complications and yes, even death.
Photo Credit: @LupusAdventurer

There couldn't be more perfect timing than now for all aspects of healthcare to band together and put the lives of those at stake FIRST!

Did you know that the last medication to be approved by the FDA to treat lupus was Plaquenil and corticosteriods in 1955 and Aspirin in 1948?!?! Thanks to GlaxoSmithKline we now have Benlysta (Belimumab) as a major contender which was just recently approved about 4 years ago! There are still clinical trials being held for it to see if it is effective for various other patient groups such as people with African/African-American heritage and even those who are pregnant. I'm hoping that more studies will show this new treatment can be helpful for those with lupus so we can have alternative options to some of the strong medications we are currently on and lessen the harmful side-effects we experience daily.

I look forward to more opportunities to share my knowledge and experience as a patient with not only Pharma, but Physicians, Hospitals, Universities, Charities, and the list goes on. It isn't a necessity for there to be a PhD next to ones name in order to help educate or save lives. All you need is mutual respect, EMPATHY and the drive to make a difference. 

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