O.C. Register: Patient Voice: A time to recommit to the fight against lupus
By Bridget Hood | Op-Ed in the Orange County Register
May 19, 2016
I was diagnosed with lupus in 1987. I was 17, and, while all of my friends looked forward to graduating high school and a future of possibility, I was forced to face my own mortality.
Like so many lupus patients, my kidneys were being attacked by my immune system. I spent most of my late teens and 20s in and out of the hospital. I endured three years and 39 treatments of chemotherapy, over 20 surgeries/procedures (including bilateral hip replacements/revisions), high-dose steroid therapy and countless medications (which, at times, were over 30 pills a day).
By 19, I was critically ill and clinging to life. I nearly died more than once, and if it wasn’t for the grace of God, my will to live and my parents’ unwavering determination to find me better medical care, I would have never seen my 20th birthday.
Twenty-nine years after my initial diagnosis, and 10 years after my amazing brother Nick saved my life by donating one of his kidneys, I am still here fighting to help others suffering from this debilitating disease.
May is Lupus Awareness Month, an important time for us to tell our stories, reach out to other lupus patients and send a message to policy makers about the importance of continuing to promote research and innovation to help lupus sufferers. The right kinds of public policy can offer hope for those of us who are fighting for new treatments and a cure.
Lupus is a chronic, autoimmune disease that affects 1.5 million Americans, and 90 percent of those diagnosed are women. The disease is more common among African American, Hispanic, Asian and Native American women.
Lupus is a most complex, multifaceted autoimmune disease, where no two patients are alike, and most patients don’t look sick, which often makes it difficult to understand. The disease’s symptoms can range from mild to life-threatening and can attack anywhere in the body at any time; symptoms can come and go, and diagnosis can take years.
Currently, lupus has only one specific medication: Benlysta, FDA-approved in 2011. Only one, and yet lupus is more common than MS, Parkinson’s, ALS and cystic fibrosis combined. There are three other medications approved, however they are not specific to lupus. They include aspirin, Prednisone and Plaquinel (which is an anti-malarial medication).
I cannot overstate the importance of hope to get through the tough times. Policy makers in Sacramento and Washington D.C. play an important role in helping patients continue their fight. The hope that there is a treatment and a cure on the horizon keeps many of us forging ahead to fight for a better future for ourselves.
We’ve come a long way since my lupus diagnosis in 1987. We’ve seen much progress in the diagnosis and treatment of lupus and there are exciting advances in molecular biology, new technologies and we are seeing a significant improvement in understanding potential mechanisms that lead to lupus and its associated complications.
However, there is still much work to be done and many challenges left to meet. It is vital that we continue to move forward with medical innovation, and not make any kind of policy decisions that would intentionally or unintentionally slow that progress down.
The effects of lupus can be devastating and can create a fiscal drain on the economy because of astronomical medical costs and a population of patients who cannot work and are on disability. Too often when politicians or bureaucrats make health care decisions, they are focused on a short-term vision of the bottom line and lose sight of what is really important and that is the long-term cost savings and, most importantly, the patient. With a disease like lupus, it is so important to be “proactive” rather than “reactive.” Patients can live a normal productive life if they’re receiving proper medical care and the right treatments.
Every May, Lupus Awareness Month offers us a new opportunity to recommit ourselves to giving patients a voice of hope and optimism. Elected officials in Sacramento and Washington, D.C., need to hear that voice and support policies that promote research, promote investment and help turn the hope for miracle medicines into a reality.
Bridget Hood is a lupus patient and Lupus L.A. board member and support group facilitator.
Read the Op-Ed at the Orange County Register.