Hepatitis Advocate Bill Remak
In today’s online world of sound bites, tweets and posts, it is easy to get a narrow and skewed perception of people. One observation is repeated thousands of times, and we end up not really knowing that person at all.
On the contrary, the internet has enabled us to get to know some people quite well, even when we have never met. When their writings, emails, and profiles square with news articles and reviews written about them, we occasionally run across a truly authentic person. That is how I felt when I met Bill Remak online.
A former laboratory scientist at UCSF, Bill Remak is Chair/CEO of the California Hepatitis C Task Force and on the Board of the California Chronic Care Coalition. He is also Secretary of the board of the FAIR Foundation (FAIR is an acronym for Fair Allocation In Research, advocating equitable distribution of bio-medical research funds by our government for all diseases). Among many other endeavors, he is currently working on representing patients with the Health Exchange Advocacy Responsibility Team as the creation of the California Health Exchanges move forward in their development.
I had located Mr. Remak through a fellow LinkedIn connection, and was immediately drawn to the first line in his Summary: “I bring a broad, unique sensible perspective to the entire spectrum of chronic illness through personal experience as a double-liver transplant recipient (HCC and cirrhosis) and diabetes survivor coupled with my medical research and public health policy background.” Subsequently, I learned that Bill had the first symptoms of Hepatitis C at age 15. Being undiagnosed and untreated, his Hep C eventually led to cirrhosis, insulin dependent diabetes, and liver cancer. He received his first liver transplant on January 5, 1998 and his second on April 26, 2007, both at the University of California San Francisco Liver Transplant Center.
As a specialist in both Diabetes Life Insurance and Hepatitis Life Insurance, I am always looking for people to spread the word that we can provide financial solutions for people with those (and many more) health conditions. However, when the word “life insurance” is involved, I have found that it takes someone who has a health condition to really appreciate what we have to offer. Sure enough, Bill wrote back. He understood. In fact, he hunted up an article he wrote called, “Life Versus Longevity” which innately expresses our shared passion that people feel respected in the midst of their afflictions, whether dealing with the medical community or a life insurance agent.
I think Bill’s email to me about the life he was given BACK will uplift your outlook on life: Pushing the limits of science and technology and faith can produce miracles. I can testify to that. These years with my family and the work I enjoy are not taken for granted; I wake up each day to make the best of it and try to make a difference. Recovering my health was hard won. One’s frame of mind has everything to do with it and having a sense of purpose can move mountains. There is this resilience we have that after a major disaster and great loss we can begin again, rebuild and survive. That is one of the great treasures in life….we don’t give up.
And Bill is passionately working to make sure that people with diabetes, liver cancer, hepatitis, and other health conditions get all the resources and care they need to live a full and purposeful life. He wrote in one blog: This is my way of giving back to society by promoting organ transplantation, health care reform and stem cell research. Serving as a patient advocate is very rewarding and I will continue to help those suffering from chronic diseases as long as I can. The work I do is voluntary and brings great joy to my life and others. It is my hope that my legacy will help make a difference now and for future generations.
I’d like to close with this endorsement given for Bill on LinkedIn, confirming that he is a genuine and great advocate for people with health conditions: I would recommend Bill. He has an outstanding reputation for helping others, he takes an active role in helping meet the needs of people, not just in his community but in other area’s also. My husband needed help in getting Social Security and Medicare, he needed a liver transplant. Bill pointed us in the right direction to help meet both of those needs. My husband is alive today after a successful liver transplant. This he would never have gotten with-out the help of Bill. Susan C, October 24, 2011
UPDATE: Since writing this blog I had the honor of visiting with Mr. Remak over the phone for over an hour. What a wealth of information he has! He wants to let you know that even in the past 7 weeks he has more good news to share. Inspired by his son, he tackled getting off some of the weight he had put on while taking immunosuppressive drugs. Losing 35 pounds has entirely eliminated his need for insulin!
I would have never gotten him to agree to publishing this without his hope that others will be inspired to volunteer for one of the many worthy causes he is involved in (see his LinkedIn profile for a list). You may email him directly at firstname.lastname@example.org or call his cell at 707-364-1802 to see how you might help.