By Kevin Zimmerman/Staff Writer
Wed Mar 19, 2008, 10:52 AM EDT
The only treatment for primary immunodeficiency disease consists of gamma globulin replacement therapy, which involves a weekly infusion of the blood product.
Under the current Medicare system, doctors do not receive full reimbursement for this costly medicine many believe helps patients lead a more normal life.
He believes because the treatment decreases the amount of time patients spend in hospitals or away from work, it ultimately saves money.
And, because primary immunodeficiency is caused by genetics, Kerry thinks it’s unfair to force families and private insurers to make up the difference in what Medicare will reimburse.
“We’re going to try to change that. There is legislation thanks to your efforts,” said Kerry. “I want to thank Team Hope. Team Hope has given hope. And it has brought an awareness to all of us. Thanks to all of you. We’re going to try to remedy this situation.”
For Bush, Sunday’s announcement comes after two years of telling anyone who would listen about primary immunodeficiency and the need to help some families pay for treatments.
“It means so much to have someone like Senator Kerry behind us,” said Bush. “Just the fact that he made a public announcement shows his commitment. He feels it is a worthy cause.”
Bush believes her job now is to keep spreading the word about primary immunodeficiency and the need to educate parents about it.
Susan Bennett, 36, of Methuen, knows education is important. She spent her whole life fighting one infection after another but no one could tell her why.
“They said it was allergies, or it runs in the family, or there’s no real reason for it,” said Bennett.
Finally, three years ago, Bennett met a doctor who ran a blood test to check for an immune deficiency. It turns out Bennett has a disorder called common variable immune deficiency. With globulin infusions, she has seen a dramatic increase in her energy level and a decrease in infections.
“I live more of a normal life,” said Bennett. “I basically got my life back.”
That is one of the reasons Team Hope organizes blood drives, so more people can learn about the disease and help defeat it.
Bush likens it to a quilt hanging on the wall at the Senior Center.
Although many people may have helped sew the different squares, you don’t look at a quilt as a collection of separate pieces. You need to step back and see the quilt for what it is — one complete project.
“Everybody is important, no matter how small the contribution,” she said. “It’s amazing the cascading effect one person can have.”
For more information on Team Hope and its upcoming Promise of Hope Wine Tasting on May 3, check out its Web site at www.teamhope.info.
Kevin Zimmerman can be reached at email@example.com.