I am telling my personal story because on May 26 the Institute for Clinical and Economic Review (ICER), a group that develops cost effectiveness reports for new treatments, held a public meeting in St. Louis about their draft report on the value of multiple myeloma treatments. I feel it is my duty to testify for all patients of this dread disease so that no treatments that demonstrate efficacy should be denied that extend or improve life because of monetary concerns
My name is Laura Roix, and I’ve been living with idiopathic pulmonary fibrosis (IPF) since 2006. After going through multiple false diagnoses from a number of doctors, I finally found what worked for me: self-advocacy and perseverance. Until I got to that point though, I went through 6 years of difficult medical experiences that finally led me to become a self-advocate for my medical care.
Starting in 2006, I visited a pulmonary doctor after being diagnosed with pneumonia multiple times. The pulmonologist found that I had scar tissue in my lungs, and we monitored it for years. He always said that it wouldn’t spread so not to worry about it – but things quickly changed in 2012. In February of that year, my doctor let me know the scarring had spread; not only in my right lung, where it was originally occurring, but also to the left.
My name is Letitia Browne-James, and I have had epilepsy all my life. Until I started to empower myself about my own care I was unsure that I would ever be cured. After my illness continued to get worse and the seizures more violent while I was trying to live life, I decided to look online for possible solutions because my experience with previous doctors continued to be frustrating and led to dead ends.. Finally, after a few months of research , I was equipped to ask the right questions, to demand better treatment, and even undergo a surgery that I originally didn’t even know existed
My name is Ronni Marks, and I was first diagnosed with Hepatitis C (HCV) in 1997. Before people began to talk about things like “comparative effectiveness” or “patient-centeredness,” patients like me were just focused on where to go for help. Treatment options back then were painful, protracted, and unpredictable. And while my friends and family tried to support me as best they could, they didn’t understand the enormity of what HCV was or what I was experiencing. At that time, the Internet was new, and there were no HCV support groups.
The Center for American Progress (CAP) released a report today claiming that the use of Lucentis for the treatment of age-related macular degeneration (AMD) wastes $1 billion a year. If you speak with anyone who has watched a loved one lose their vision to AMD, you would not think that proper treatment of this disease is a “waste.” AMD is a progressive eye disease that predominantly affects older people. In my grandfather’s case, it robbed him of his ability to drive a car and also took away simple joys that kept him connected to the world like reading the newspaper, watching the nightly news and Turner Classic Movies, and even engaging in coffee conversations around the dinner table.
The American Association of People with Disabilities is a founding member of the Partnership to Improve Patient Care (PIPC), and continue to support the patient-centered principles that drive PIPC’s work. We were pleased to see the introduction of “The Patient-Centered Outcomes Research Act of 2009” and even more pleased to see the Institute finally created by Congress. The AAPD supports the Patient-Centered Outcomes Research Institute’s (PCORI) patient-centered approach to comparative effectiveness research (CER) and the important provisions written into the law which will ensure a continued focus on patient and provider needs and better healthcare quality. As stated so eloquently by PIPC’s Chairman Tony Coelho, we also recognize that access to treatment options is imperative to fulfill the promise of patient-centered CER to improve the quality of health care.
I am Andrew Sperling, Director of Legislative Advocacy for the National Alliance on Mental Illness (NAMI), and a member of the Steering Committee for the Partnership to Improve Patient Care (PIPC). NAMI is the largest national organization representing individuals living with serious mental illness and their families. Through our more than 1,100 affiliates in all 50 states NAMI is engaged in support, education and advocacy around serious mental illness.
Greetings! My name is Kimberly Minor. As the inaugural guest feature for the ‘PIPC Patients’ blog, I must give my highest thanks to Tony Coelho, Chairman of the Partnership to Improve Patient Care (PIPC) for this excitingly new addition to PIPC – the PIPC Patients blog.