Bridget Hood, a Lupus L.A. board member who lives with the disease, has published an editorial in a California newspaper to mark May — Lupus Awareness Month — and to raise awareness of lupus and advocate for new research into potential treatments or a cure. Specifically, Hood called on policymakers to do more to support the development of new medicines and to ensure that the people who need them are able to get them.
In her opinion piece, published on May 19 in The Orange County Register and titled “A time to recommit to the fight against lupus,” Hood recalled being diagnosed with the disease at age 17, and nearly dying when she was 19. “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,” she wrote.
“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,” Hood continued. “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.”
Because lupus is a complex, multifaceted autoimmune disease, no two lupus patients are alike. The disease’s symptoms can range from mild to life-threatening, and it can attack anywhere in the body at any time, coming and going, making it difficult to diagnose.
What’s more, Hood said: “Currently, lupus has only one specific medication: Benlysta, FDA-approved in 2011. Only one, and yet lupus is more common than MS [multiple sclerosis], Parkinson’s, ALS [amyotrophic lateral sclerosis] 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).”
Proper medical care of lupus has to be personalized, making new treatments vitally important to patients — and government and political leaders need to support efforts at medical innovation, she said.
“The right kinds of public policy can offer hope for those of us who are fighting for new treatments and a cure. Policy makers in Sacramento and Washington D.C. play an important role in helping patients continue their fight. 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,” she concluded.
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