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Posted on 17. July 2014

Creating Connections

By Abbie Cornett

When I stepped into the role of Patient Advocate at IG Living, I wanted to find better ways to connect with you, the patients. I realize I am very fortunate because although I have chronic variable immune deficiency (CVID), I am able to live a relatively normal life - as long as I receive my intravenous immune globulin (IVIG) infusion every month. I knew my personal experience would help me relate to other patients and advocacy groups, but the question was how could I make connections in a more tangible and meaningful way?

I took the first step last month when I attended the BIO International 2014 conference in San Diego, Calif. BIO is the largest event of its kind, with over 15,000 participants from all 50 states, and 70 countries. While there, I was able to attend many excellent seminars that expanded my knowledge of diseases, research, and legal issues facing patients, physicians and researchers.

One of the forums dealt with drug development for rare and orphan diseases - those conditions that affect a very small percentage of the population. It focused on all the hurdles the biopharmaceutical industry faces, including the issues regarding clinical trials and recruitment for these trials. As a patient, I have at times been skeptical of the pharmaceutical industry - possibly you have felt the same way. But learning about the many complexities that make new drug development in the biotherapeutic space so risky was something I hadn’t considered before. It’s quite amazing with all the risk involved that this is an area of tremendous growth in recent years, thanks in part to the entrance of large pharmaceutical companies into the marketplace. This growth, fueled by an increasing number of partnerships across diverse stakeholders, has created positive incentives for both the research and development of orphan drugs. As this trend continues, there’s great promise for the improved health of patients with debilitating and life-threatening rare diseases. Quite an eye opener!

While at BIO, I gained a better understanding of where the industry stands in regards to research, development and legal issues, but my most productive activity involved networking with representatives from the patient community. I was thrilled to find an entire area dedicated to patient advocacy where I connected with a number of other advocates and representatives from umbrella advocacy groups dedicated to helping patients with issues such as access to treatment, insurance concerns, peer support and disease information. I came away knowing the connections that I formed at this conference are invaluable in increasing my reach and effectiveness as Patient Advocate for IG Living.

Now with renewed energy, it is my goal to leverage my new connections to form closer ties and partnerships within the patient community to positively impact the lives of the many individuals who rely on immune globulin therapy.

What are your thoughts about ways I can most effectively advocate for patients in our community?

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Comments (5) -

Gail
9:27 AM on Friday, July 18, 2014

Education of those outside our community is the highest priority I see. We are all tied of being told we don't look sick.

debbie
10:24 AM on Friday, July 18, 2014

Bravo Abbie, What a great way to kick start your patient advocacy by attending a conferencing and learning how many people and organizations are approaching advocacy and then reaching out to us, the patients.  I am not sure if you have seen the work of ACE (arthritis consumer experts) who are doing interesting advocacy work in Canada.  They are working with government, patients, doctors, pharmaceutical companies and the researchers to create different ways of supporting and connecting patients.
We are part of the "village," the more connections, the better.  I look forward to seeing more of your work.

Pamela
1:56 PM on Saturday, July 19, 2014

So glad you were able to attend such an educational conferences!  It is very important to understand some of these diseases.  I am a person who lives with one of thse rare diseases, stiff-persons syndrome, so I can fully understand how important it is to get the IVIG every 14 days, in ordre to keep going.

Kellie Hanas
5:31 PM on Sunday, July 20, 2014

I am so pleased there are advocacy groups trying to educate both patients and their families as well as the general public on these rare diseases.   It is extremely frustrating to have people look at me and say "you don't look sick".

Linda Thornrose
8:16 AM on Monday, July 21, 2014

Having someone with your new connections with your hand on the pulse of all these areas that connect those of us who suffer from 'orphan' diseases (I, too, have CVID)will benefit all.  I have had IVIG for ten years and still learn new ideas and information that impact my life.  Very helpful.  Though I don't like that others suffer, I so appreciate the shared support and solutions that may or may not help me, but help someone else.  Looking forward to the things you are able to impart to us.  Thank you for being interested and willing to help!

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