In America we get to have our say in the way our country is run. Never was that message made clearer to me than today. I got to testify in an open Public Hearing of the ACC (Arthritis Advisory Committee). They discussed the biologic license application (BLA) 125370, belimumab, proposed trade name Benylysta, in lupus patients. Bottom line, the first drug for patients with lupus in 5o years! Meetings like this allow the FDA to get advice from scientifically knowledgeable advisors in an open forum, along with people like me who are not medical folk…just families and victims of the disease. We get to say how the disease has affected us. And we get 3 minutes to do that.
Think about it. If you had 3 minutes to tell someone how your life had changed because of a disease and how it could impact the rest of your life, the lives of countless others who still suffer and even those yet unborn who will come into this world with no hope for living past a certain age without pain every day…suffering for days and weeks at a time…and watching families hurt knowing there is nothing to help. No drugs. No time. No hope. Put all that into 3 minutes. That’s what I tried to do today. Here is my 3 minute talk before the hearing in the Washington area this afternoon. I’ll share the outcome at the end.
GOOD AFTERNOON. MY NAME IS BRENDA BLACKMON. (I ESTABLISH NO CONNECTION TO THE DRUG COMPANY OR ITS PARTNERS, ETC. and I start to cry-can’t help it) MY DAUGHTER, KELLY, HAS LUPUS. SHE WAS AN HONOR STUDENT, ON HER WAY TO LAW SCHOOL, GONNA MARRY HER COLLEGE SWEETHEART AND HAVE THE LIFE EVERY MOM DREAMS FOR HER DAUGHTER. FAST FORWARD THREE YEARS LATER.
I WAS SITTING IN THE ICU OF ENGLEWOOD HOSPITAL IN NEW JERSEY, HOLDING MY DAUGHTER’S HAND. SHE HAD LOST 30 POUNDS IN LESS THAN A MONTH. SHE WAS CONNECTED TO LIFE SUPPORT. I HAD CRIED AND PRAYED AT HER BEDSIDE FOR 52 DAYS, ALONGSIDE HER HUSBAND, HER COLLEGE SWEETHEART.
AN OVERNIGHT HOSPITAL STAY FROM WHAT I DESCRIBE AS A “HOUSE” TV EPISODE-ONLY THIS WAS FOR REAL. LUPUS ATTACKED KELLY’S BRAIN. 14 DOCTORS WITH SPECIALITIES IN HEART, KIDNEYS, LUNGS, MUSCLES, BRAIN AND THE NERVOUS SYSTEM HAD ALL GIVEN UP ON HER. EVEN PERSONAL FRIENDS WHO WERE PHYSICIANS CAME TO SAY THEIR GOOD-BYES. AFTERALL FOR 50 YEARS, THERE WAS NOTHING NEW TO FIGHT AGAINST LUPUS. AND NOTHING IS TYPICAL WITH THIS CHRONIC DISEASE EXCEPT THE SUFFERING, MUCH IN SILENCE FOR THE PATIENTS AND THE FAMILIES.
CAN YOU IMAGINE A DOCTOR TELLING YOU, YOUR DAUGHTER IS GOING TO DIE?! YOU MUST TAKE HER OFF LIFE SUPPORT! I ASKED GOD TO TAKE MY LIFE INSTEAD OF HERS!!!
WE ASKED PEOPLE AROUND THE WORLD TO PRAY FOR HER. THERE WAS NOTHING THAT DOCTORS COULD DO. NO DRUGS WERE AVAILABLE TO HELP. WE ONLY HAD PRAYER.
…….That was the half way mark of my statement. the good news came by the time I arrived back to work after the hearing. What could have taken months, took only hours. The panel recommended the FDA approve the drug! That could mean early next month Benlysta could get FDA’s stamp of approval and lupus patients and their families and communities get a special kind of treatment -hope -something they haven’t had in 50 years.
And because I live in America, I got My Say in little history today, that was as personal as it gets.
