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Lupus Patients Find Hope In the Face of Hardship

May 24, 2018
One and a half million and counting.

That’s how many people suffer from lupus in the United States – and also the number of Americans waiting and praying for the biopharmaceutical industry to find better treatments for this devastating, chronic condition.

Lupus is a misunderstood autoimmune disease that is difficult to diagnose, challenging to treat and hard to endure. People living with lupus can experience a wide variety of symptoms, including pain, extreme fatigue, hair loss, cognitive issues and physical impairments that impact every facet of their lives. Yet two-thirds of the public knows little or nothing about lupus, and resources to combat this disease remain underfunded relative to its prevalence and public health impact.

Lupus strikes mostly women of childbearing age, but men, teenagers and children are also at risk.

[caption id="attachment_28172" align="alignleft" width="300"] Dr. Karen Costenbader (left) and Amarissa Mauricio (right) address the audience at the Lupus Foundation of America’s 2018 Congressional Briefing on Lupus on Capitol Hill.[/caption]

For 12-year-old Amarissa of Puerto Rico, news of her lupus diagnosis came just five years ago. A girl who loved to read, spent her days doing gymnastics, and cherished living in the Caribbean suddenly found herself so weak that she could barely pull herself into bed.

What started as fatigue and swollen joints led to a butterfly rash, arthritis, MRSA, a bacterial stomach infection, stage 4 kidney disease, an enlarged heart, fluid in the lungs and a fever of 104 that lasted for days. In short, a nightmare.

Children should be worried about things like making good grades and new friends – not about spending 42 days straight in the hospital.

As we mark Lupus Awareness Month, it’s important to tell the stories of patients like Amarissa who are counting on advances in biotechnology to help treat and ultimately cure this life-altering disease.

Fortunately, there is reason for hope. A recent report from the Lupus Foundation of America and PhRMA catalogued 39 new medicines and cures in development for lupus. But until new therapies are approved, BIO will keep fighting for a policy environment that incentivizes breakthroughs that can help patients like Amarissa get and stay better.

This year, BIO celebrates our 25th anniversary as an organization. While our industry is still young, the entrepreneurs, scientists, researchers, and investors who work in biotechnology have a history of rising to meet serious challenges. Today, 83 percent of children with cancer survive, compared to just 58 percent in the mid-1970s. Hepatitis C, a once-incurable disease, now has a cure rate of more than 90 percent, thanks to new treatments. And HIV/AIDS — once a death sentence – is now a manageable, chronic condition.

This is what happens when hard work, dedication and courage intersect. This is the power and promise of biopharmaceutical innovation, and it’s why I am optimistic that patients like Amarissa will one day live lupus-free.

Today, Amarissa is in the 10th grade and refuses to let lupus define her. She is making her voice heard by participating in events across the nation, and she is speaking out to underscore the importance of funding new research. She even helped recruit gymnast Gabby Douglas, a U.S. Olympic gold medalist, to help raise awareness of lupus.

If you’re touched by Amarissa’s story, visit to learn how you can join the fight against lupus.