Donate

Our last product guide hit the presses in early April 2020, right as the coronavirus caused the world to come to a screeching halt. At the time, many assumed a few weeks of lockdowns would control the virus. Yet here we are a year later, with almost everything we considered to be a temporary change now seemingly a normal part of life. More than 30.5 million cases were confirmed in the U.S., taking the lives of more than 550,000 people. Amidst the tragedy and suffering, the scientific and medical communities responded in heroic ways. From frontline workers to the teams implementing a testing network that conducted more than 376 million tests, the response to the pandemic demonstrated the potential that exists when we work together.

In just 10 months, the pharmaceutical industry, using years of work and research findings, was able to create, research, manufacture and begin distributing vaccines that have been proven safe and effective at preventing death from COVID-19. Since January, more than 200.5 million doses of vaccine have been delivered to states, with about 2.9 million doses administered per day on average.

Routine medical procedures and treatments were upended during the pandemic, and people living with a bleeding disorder saw changes to systems that were permanent fixtures in their lives. With many hospitals and Hemophilia Treatment Centers closed for anything but COVID-19 treatment, community members were forced to change their routines. One mom of a 3-year-old boy with hemophilia shared that she began to use her local pediatrician’s office to assist with infusions on a weekly basis, instead of driving into the city to visit the HTC, which was in a large hospital.A mom of a teenage son with hemophilia shared a positive experience with their Annual Comp Clinic, now taking place as a telehealth visit. This process, which previously lasted hours in person, has been shortened substantially. Through telehealth, medical providers still provided high-quality individual care, even going so far as to measure joint range of motion over the video screen.

While the world was changing fast in almost every other sense, the list of treatment options available for bleeding disorders experienced a quiet year with no major changes. Though, this year鈥檚 list does reflect some edits:

  • Desmopressin Acetate Injection鈥攏ew product addition鈥Launched for FVIII in May 2020 by Dr. Reddy’s Laboratories, this drug is a generic version of DDAVP. DDAVP is the licensed/trademark name owned by Ferring Pharmaceuticals.
  • Wilate鈥攏ew indication listed for Factor VIII鈥This product, manufactured by Octapharama, has been available for treatment of vWD since 2009 but was approved for treatment of Factor VIII in October 2019. This was not reflected on our product charts last year by omission.
  • Mononine鈥攔emoved from available products鈥CSL Behring announced in 2020 that it would no longer be distributing or manufacturing this factor IX treatment, saying, 鈥淥ver time, patients have transitioned from older therapies to newer, next generation treatment options, and very few patients currently remain on MONONINE in the U.S.鈥

The future of treatment for bleeding disorders continues to be an exciting topic for our community. In our emerging therapies charts, you鈥檒l find 53 clinical trials currently underway, investigating the efficacy and safety of 30 investigational therapeutic products. While these things don鈥檛 happen overnight, years of research have led to this moment in which our community could see several product approvals in the next few years, some that could drastically affect the way people with a bleeding disorder receive care.


Sign up for E-mails, Dateline Magazine, and other ways to stay connected.