June 30, 2020 Blogs

As patients, we have the power.

My name is Sneha Dave, I am the executive director of the Health Advocacy Summit. I am 22 years old, a lover of the outdoors, and an ulcerative colitis patient.

It started for me when I was six years old, had to use the restroom frequently, and was having abnormal symptoms. My mom took me to the hospital, and I was quickly given a diagnosis of ulcerative colitis. Over time, my condition evolved and worsened to the point of having my large intestine surgically removed during my freshman year of high school. 

I now live with a J-pouch, which is when the small intestine is built into the shape of a J. I live with chronic pouchitis, which is inflammation of the J-pouch, and a respiratory issue that can be attributed to the drug I take to control my ulcerative colitis, Entyvio. 

The problem is that Entyvio has a list price of nearly $7,000 per month. But due to lingering inflammation, I’m hoping soon I can find a different treatment option –– most likely Stelara, which now has an average list price of over $11,000 per month. Unfortunately, high-priced drugs like this are the best option for a lot of patients with ulcerative colitis.

The drug pricing issue is important to me because I was on pharmaceutical patient advisory boards when I was 18 and have interned at one of the largest pharmaceutical company headquarters in health economics and outcomes research. I understand that pharmaceutical companies are not the only bad actors, but they certainly spend lots of money on marketing and other programs that are not directly helping patients. 

I have been so disturbed by the monopolistic nature of pharmaceuticals and other issues such as long patents. I feel a huge sense of urgency to help ensure real change and transparency in the entire pricing process, especially for the next generation of patients. It is time for pharmaceutical companies (and insurers, PBMs, and hospitals) to make drugs affordable rather than spending frivolously or hoarding money for the executives.

Patient advocacy is a buzz-word within pharmaceutical companies. But real patient advocacy when it comes to pharmaceutical companies is putting an end to high prices and recognizing that things like patient assistant programs are important, but are not getting at the root of the challenges many of us face. 

As patients, we have the power to change what the system looks like. I hope you will join this movement and represent and empower patients whose voices may not be in the picture. Patients in rural areas, minority communities, and those who simply have too much on their plate to participate in patient advocacy part or full time. 


Note: The views in this article do not represent those of the Health Advocacy Summit, the Crohn’s and Colitis Young Adults Network, or its affiliates.


Patients For Affordable Drugs is the only independent national patient organization focused exclusively on achieving policy changes to lower the price of prescription drugs.