If you ever get diagnosed with a rare blood disorder, there is atleast one person you might want to know: Judith Baker.
The 54-year-old Sherman Oaks resident is the region IXadministrative director of the Federal Hemophilia Treatment Centers.Based out of Mattel Children's Hospital UCLA, Baker oversees 14hemophilia centers in California, Hawaii, Nevada and Guam.
'I try to improve the health of people with rare blood disorders.I specifically focus on making sure that they have the best clinicalcare,' Baker said.
'We organize specialty teams of doctors, nurses, physicaltherapists and social workers,' she said. 'It's part of a wholenationwide network of special diagnosis and treatment centers toimprove the life of people with rare blood disorders.'
The most common blood disorder Baker works with is hemophilia -actually a group of genetic bleeding disorders in which the bloodtakes longer to clot and can result in bleeding into the joints orspontaneous internal bleeding.
Hemophilia is mostly found in men, says Baker. Without moderntreatments it can result in patients becoming crippled, she says, orcan even be fatal.
When Baker began working with the Federal Hemophilia TreatmentCenters in 1990, there were no hemophilia services in Nevada,Hawaii, Guam and some parts of California.
Part of her job includes identifying these underserved areas andcreating specialized teams for them, which is what she did inNevada, Hawaii and Guam.
She also aims to reduce the cost of treatment for patients andworks with insurance companies to make sure patients can be seen bya doctor who specializes in hemophilia.
'Most health insurance companies allow their patients to be seenat a hemophilia center but some don't, so that's really intensework,' Baker said. 'We work diplomatically yet forcefully with thestate health department and these insurers to say, 'Look, we don'twant to steal your patients. Just send them to us once a year and wewill give them a full, comprehensive evaluation and then we willsend you the recommendations.''
Baker's job duties have changed with the times. When she firststarted, HIV was considered a death sentence and was a serious issuefor hemophilia patients.
'HIV contaminated the blood supply back in the 1970s,' Bakersaid. 'And folks with hemophilia, their medicine is made from bloodor blood components, so there was this terrific tragedy of themedicine that's allowing you to get out of bed and function, you gotHIV from it.'
Baker worked with the federal government to identify the peoplewho received contaminated blood and helped physicians learn how toeducate their patients about the then-unfamiliar disease.
Now, to keep up with the latest information and to make sure hergroup is doing the best work it can, Baker has decided to go back toschool. She has a graduate degree in public health and healthservices from the University of Michigan and has begun the doctorateprogram in health services at UCLA School of Public Health.
On top of her work, Baker also served a four-year term as aconsumer advocate on the U.S. Food and Drug Administration's BloodProduct Advisory Committee.
The committee - composed of physicians, scientists and consumeradvocates - reviews data regarding the safety, effectiveness andappropriate use of blood and products derived from blood, as well asother blood-related issues. The committee votes on topics that theFDA later considers when establishing regulatory guidelines.
Val Bias, chief executive officer of the National HemophiliaFoundation, has known Baker for about 20 years. He nominated Bakerto be on the FDA's Blood Product Advisory Committee.
'Judy is one of those people who has a long enough tenure andknowledge of all aspects of the care for hemophilia patients thatmade her the ideal candidate for a recommendation,' Bias said. 'Whenwe recommend someone be on that kind of committee, we not only askthem for their professional knowledge but of their consumerknowledge as well.'
Bias is not only affiliated with hemophilia in a professionalmanner, but he suffers from severe hemophilia and lives in theregion Baker oversees.
He says Baker's work is vital to making sure all clinicianstreating patients with bleeding disorders are on the same page.
'She's one of the most dedicated professionals I've ever workedwith,' Bias said. 'And the thing I like about Judith is herwillingness to learn about things she may not be familiar with yet.And that openness really makes her effective.'
In July and December of 2010, the FDA asked Baker to sit in ontwo additional Blood Product Advisory Committee meetings.
In December, the committee discussed a virus that has been foundin some people who have been diagnosed with prostate cancer andchronic fatigue. The committee looked at the blood recipients' riskof getting the virus if a blood donor had been diagnosed with eitherdisease.
'Unfortunately, the science is not so clear because not allpeople with prostate cancer or chronic fatigue are found to havethis particular virus,' Baker said.
'So how do you help the FDA weed through the science and givethem advice so they make good policy decisions about what we need todo when people come in to donate blood?' she asked. 'Are we going togive you a question like, 'Have you ever been diagnosed with chronicfatigue or prostate cancer? If so, you may consider not donatingtoday.' So it's those kind of really difficult issues (that wediscuss).'
And in October, Baker attended a meeting for the FDA'sTransmissible Spongiform Encephalopathy Committee to review the riskassessment for the blood supply's potential exposure to mad cowdisease.
Baker also works with the Centers for Disease Control andPrevention's Division of Blood Disorders and co-chairs the Home CareForum of the Hemophilia Council of California.
'It's very stimulating, it's not just doing one thing,' she said.'I work not just for one organization - yes, I'm here based at UCLAand very delighted and proud and honored to be here - and yet thework is multi-institutional.'
Though Baker's goal is to improve the lives of patients livingwith catastrophic blood disorders, she doesn't usually meet themface-to-face.
'I do a lot of behind-the-scenes stuff,' she said. 'The grantsthat I write help support the salary of the nurse that sees (thepatient) or the physical therapist or the social worker. I run anannual clinical education conference so that we educate the newdoctors, the new nurses, the new social workers, as well as all ofthe rest of the team.'
Baker says she hopes the work she has done for hemophilia willpay off for others as well.
People with rare disorders need to be treated by experts who arefamiliar with the disorder, she says, and they also need nurses,social workers, physical therapists and other professionals becausethese conditions affect people socially, emotionally andfinancially.
And, she says, she wants to make sure 'your health concerndoesn't get in the way of you living your dreams.'
stephanie.cary@dailybreeze.com
Stephanie Cary 310-540-5511, Ext. 6630
