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This Might Hurt

Advocates for vaccination records say a complete registry of shots would help the state navigate major health crises. Opponents say it would jeopardize patient privacy. Lawmakers like the potential cost savings, but they still aren’t sure where they stand.

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Anna Dragsbaek has worked quietly for years to build support for expanding the state’s immunization registry, a database of vaccines given to Texans. Now, Dragsbaek, the executive director of the Texas-based Immunization Partnership, is ready for the spotlight: She and her allies are asking lawmakers to include all Texans in the registry. They’ll make their case before an influential Senate committee this month — and face an impassioned and formidable group of privacy proponents and anti-immunization parents.

Advocates for vaccination records say they're vital to a robust public health system, that a complete registry of those shots would help the state navigate major health crises. Furthermore, they say, it would save the state huge sums in unnecessary bureaucracy. Opponents say the registry jeopardizes patient privacy, that it's an effort to force people to give up their medical records. Lawmakers aren’t quite sure where they stand.

At the heart of the debate is the question of who's included. The registry has the capacity to track every vaccine given to every person in the state. Currently, it only tracks vaccines for children whose parents opt in to the registry and adults who agree at age 18 to keep their vaccines on file with the state or are emergency first responders. Advocates want all Texas children’s shot records to be included in the registry unless the parents actively opt out. 

Dragsbaek argues that a well-populated registry will allow for a significantly better response to health crises like the H1N1 virus and Hurricane Katrina. Texas is 12th in the country in vaccination rates, with about 22 percent of kids missing at least one dose of one vaccination, and 96 percent of the state's under-18 population is in the database, according to the Department of State Health Services. Dragsbaek believes that number might be inflated (she says data quality has been a consistent problem in the registry) but that nonetheless, getting adults into the system will take time — the registry only just started including people older than 18 last session. Vaccines are often in short supply in the U.S., and distributing the shots efficiently can be a challenge. A full registry allows officials to know where the need is. “That prioritization and identification of vulnerability is crucial,” Dragsbaek says. “We can’t do that in Texas right now because our database is so poorly populated.”

During the H1N1 crisis last year, vaccines came in late and in small quantities, and many children never received the requisite second dose. Priority groups — children, caretakers for infants under six months and those with immunodeficiency — were not reached as efficiently as health officials hoped, Dragsbaek says. In the aftermath of that crisis, the Legislature is considering methods to improve vaccination systems, giving vaccination advocates the chance they’ve been waiting for to change the state’s registry. 

They’ll have tough opposition, says Dawn Richardson, head of Parents Requesting Open Vaccine Education, or PROVE. Richardson is a leading voice in Texas for allowing parents to decide whether their children should get vaccinated. While Dragsbaek has been waging war to get vaccines to more children, Richardson has been just as active in reminding parents they have a choice. Richardson has a lot of questions about the safety of vaccines but says that when it comes to the registry, it’s simply a question of privacy rights. “Just because the vaccines are the sacred cow, you can’t give away people’s medical records,” she says.

Richardson maintains that even if the opt-out method is more time-consuming, it’s worth it to protect medical information. She argues the current system works: Parents can give consent for the registry when they apply for their child’s birth certificate. During emergency situations, like H1N1, the state can already collect immunization data without consent. “There are really no burdens on the registry at this point,” Richardson says. After all, the vast majority of parents let their children's information go into the registry. This new effort, she argues, is “an attempt to get people in there who don’t want to be.”

Richardson has a strong base of support: National organizations that favor parental choice, autism communities that believe vaccines can cause the disease, privacy advocates. Then there are the anti-vaccine and vaccine safety parents. Well-educated and tenacious, they have no qualms about making themselves heard. “It offends people on all ends of the spectrum,” Richardson says. “It’s made for interesting political allies.”

But Dragsbaek says the opt-in registry doesn’t do the trick. The current system requires so much paperwork that parents don’t always sign up and doctors don’t always follow through. "We spend hundreds of thousands to protect the privacy of 4 percent of the population," she argues. Dragsbaek points out the system is just as secure as online financial records and other such private online information. Richardson’s view is “a shrill, irrational response that really doesn’t have much logic to it when you understand how the system works,” she says.

With help from the Texas Medical Association and the Texas United Way, Dragsbaek has slowly tried to move the registry conversation away from questions of vaccine safety, which she says is a separate fight. She shies from the term “opt-out,” which she says can cause even more controversy. She prefers to use “implied consent” or “voluntary exclusion.” She says she’s focusing on the logistics of improving the database. After Katrina, she helped push through a bill to include EMTs and other first-responders in the registry. Last session she persuaded lawmakers to allow for interstate data sharing. Then she helped pass bills to allow young adults turning 18 to keep their vaccine records on file, turning the database into a “lifetime registry.”

The reality, public health experts say, is that in a community where only a small percentage of people are vaccinated, even those who have the shot may be at risk for the disease. “No vaccine is perfect,” says Dr. John Gullett, a retired infectious disease expert who spent most of his career in Abilene. “The best vaccine with the best response rate is probably 95 percent or 98 percent, but there are still some people who don’t respond to it.” If a population has a high enough percentage of the population vaccinated, Gullett says, the disease cannot easily enter the community, and even those without the vaccination will be protected — “herd immunity,” he calls it.

For state Rep. Garnet Coleman, D-Houston, the H1N1 experience highlighted the need for a more inclusive registry, something he’s been advocating for years. “We don’t really know how many people are immunized and whether we’ve reached the point of herd immunity unless we have that information,” Coleman explains. Dragsbaek agrees: The registry, she says, is “a decision-making tool about where to deploy resources.” It can help alert parents when children need booster shots and second doses, as well as prevent children from unnecessarily getting the same vaccinations twice. When resources are slim — as they often are with vaccines, advocates say — the registry would allow for maximum immunization.

Furthermore, people often need their vaccination records later in life, to get into the army or get a job in healthcare or even just to go to college. “Let’s make it easy for people to get those jobs, to go to school, to join the army,” says Jason Sabo, a United Way of Texas lobbyist who has been a primary advocate of the effort.

Lawmakers are listening closely, and weighing their options. While Coleman supports Dragsbaek’s efforts, State Rep. John Zerwas, R-Simonton, has concerns about the new effort. “If you support immunization registries, you have to support that they have some benefit to public health,” says Zerwas, an anesthesiologist who chairs the House Appropriations Subcommittee on Health and Human Services — and is an influential voice in the debate. “I don’t think they have the magnitude of benefit that we in Texas should demand that everyone should be a part of it.”

State Sen. Jane Nelson, R-Flower Mound, who chairs the Senate Health and Human Services Committee and has been one of Dragsbaek’s “champions” on the registry issue, didn’t respond to requests for an interview. But in a written statement, she said, “The statewide immunization registry offers parents a convenient way to track their children’s vaccinations … but parental rights must be respected and parents should have the last word."

Dragsbaek’s coalition may have to rely for support on TMA, a coalition partner with significant political clout. Traditionally, TMA has been more than willing to speak up on the need for the registry. “The benefits outweigh the concerns [around the registry], which to an extent I think are largely speculative,” says Dr. Jeff Levin, chair for the Council on Public Health at TMA. But advocates acknowledge that they face a tough balancing act between privacy and public health. “Nelson has to her credit been walking that very fine line very well,” says Jason Sabo, the lobbyist for the United Way of Texas and an active partner with Dragsbaek.

If the Legislature does decide to support the registry change, public health may not have anything to do with it. Advocates say the new system will cut costs dramatically: In her upcoming testimony, Dragsbaek will argue the current system costs $1.13 per record under the opt-in system, which adds up when there's 24 million potential entries. The current system is expensive because the state must reach out to parents to ask them to opt in, and then must process the paperwork for the 96 percent participating. Dragbaek's proposal would mean the state only had to process the four percent not participating rather than the 96 percent who are. Since the governor has demanded every agency find ways to cut five percent of their budget, anything with savings has legislative appeal.

The cost saving measures have caught the attention of Rep. Lois Kolkhorst, R-Brenham, the chair of the House Public Health Committee. “Would it be wiser to stretch that tax dollar and cut down on the bureaucratic waste?” she asks. “We have to look at not just policy but what we’re willing to spend.” But even Kolkhorst is hesitant to openly support the effort, citing privacy concerns. “I’m listening very carefully to both sides,” she says.

Advocates for the registry will take any reasoning they can get to bring legislators on board, but they say the overall goal is not about government efficiency or helping people keep track of their own records. “At the end of the day,” says Dragsbaek, “it is about getting shots in arms. It is about stopping vaccine-preventable diseases."

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Health care State government Department of State Health Services Federal health reform Garnet Coleman Health And Human Services Commission Jane Nelson Lois Kolkhorst State agencies