by Katie Worth

State programs that track Zika infections and Zika-related birth defects around the country are in jeopardy as public health officials have been told not to count on federal funds for those efforts after July.

In meetings at the Centers for Disease Control and Prevention in Atlanta last week, federal officials told state health departments that Zika funding initially envisioned to last five years will likely run out this summer instead, according to representatives of six states that attended the meetings. State health officials say this could harm their ability to prepare for an inevitable wave of new infections, or to provide services for babies already struggling with Zika-related birth-defects.

The potential loss of federal funding comes as health officials are bracing for this summer’s mosquito season, and as the dangers associated with the mosquito-borne disease are finally becoming clearer. After the disease erupted in Brazil in 2015, it was discovered that the otherwise mild virus caused neurological defects in developing fetuses. A CDC report released this month concluded that one in 10 pregnant women with Zika gave birth to a child with serious birth defects. Another CDC study found that a Zika infection increased the chances of delivering a baby with certain birth defects 20-fold.

Over the course of 2016, the virus spread to at least 58 countries and territories; outbreaks occurred in Puerto Rico, the U.S. Virgin Islands, American Samoa, Florida and Texas, and pregnant women infected with the disease during travel were identified in 44 states. Last year in the U.S., 77 Zika babies died in the womb, while 51 babies were born with Zika-related birth defects. Each of the surviving children will cost an estimated $10 million to care for during their lifetimes.

Money problems have troubled the public health response to Zika since last February, when the Obama administration asked Congress for an emergency infusion of $1.9 billion for the crisis. But the plan languished after Republicans inserted a provision blocking Planned Parenthood from receiving money from the bill and Democrats balked. Congress finally approved a $1.1 billion package in September after removing the Planned Parenthood language.

That money was divvied up between several federal agencies. Some of it funded vaccine research, some helped Puerto Rico with mosquito control and some was sent abroad for international response. Nearly $400 million was sent to CDC, and the bulk of that went to public health departments around the country.

But the money earmarked for the CDC was a one-time infusion and is now nearly spent, according to to state health officials who say they’ve been told by the agency to not count on new money for Zika. State labs, which ran 60,000 Zika tests in 2016, were told they should expect CDC support for mosquito-borne disease testing to return to pre-Zika levels.

That level of funding “is really small, and in most cases funds a half of an employee and no supplies,” said Kelly Wroblewski, director of infectious disease programs for the Association of Public Health Laboratories, who attended last week’s meetings.

CDC officials declined to comment on the meetings or any proposed funding cuts, noting that no budget has been finalized. But officials from several state health departments described the meetings. In some, they said, the funding news was delivered by PowerPoint.

Tracking Birth Defects

Among the programs potentially affected by cuts is one that aimed to track Zika-associated birth defects, educate women and doctors about them, and follow up with families of Zika babies after their birth. Before Zika emerged, only a handful of states actively tracked microcephaly — a condition in which improper brain development leads to an abnormally small head — and the other neurological conditions now associated with the disease. This paucity of data has made it difficult to parse which cases are triggered by Zika and which may be attributable to other causes.

To solve this problem, the CDC last year funneled money to states to create or bolster birth defect registries. The funding was structured as a five-year grant, predicated on future congressional appropriations. However, at last week’s meeting, CDC officials advised states to prepare for the grant to end in July — after just one year.

An early end to the grant would deal a major blow to many states’ efforts to track Zika’s impacts and help families affected by it.

Some states, like Pennsylvania, had never tracked birth defects until now. The $669,000 they received from the CDC allowed them to do so, said the state’s health secretary, Karen Murphy. Murphy hesitated to predict what will happen with the federal budget, but she acknowledged that without CDC funding, “we would have no way to track birth defects.”

Texas, which has the nation’s fourth highest number of confirmed Zika cases, has long tracked birth defects. But the size of the state made it a time-consuming process, said Texas Department of State Health Services spokesman Chris Van Deusen, who was briefed on the meetings. CDC funding helped Texas speed up the time it takes to register a birth defect from two years to three months. This, in turn, helped the state provide services to the families of Zika babies, Van Deusen said.

In California, federal funding expanded surveillance for Zika-related birth defects from 10 counties to 19. The state now tracks all counties infested with Aedes aegypti, the mosquito that primarily spreads Zika, as well as the five counties with the highest numbers of pregnant women with infections. In an emailed statement, a California Department of Public Health spokesman said department officials attended the meetings in Atlanta and were advised the surveillance funding may end this year. “Changes to the funding stream will directly affect surveillance efforts,” the statement said.

In Louisiana, which counts among the states most at risk of Zika due to its climate and mosquito population, federal funding has helped the state transition from a passive birth defect tracking system — in which birth defects are noted on birth certificates and voluntarily reported by doctors — to an active one, where health officials seek out information from birthing centers, said Dr. Frank Welch, medical director for community preparedness at the Louisiana Department of Health.

“You can imagine it’s much better reporting because it’s closer in time. People don’t have to remember back two or three years,” he said.

Losing funding, he said, could make them revert to a passive system, as well as jeopardize educational outreach for women and doctors, the distribution of Zika prevention kits and follow-up for pregnant women exposed to the virus. “What we heard last week was very disappointing, especially after all the work we’ve done to prepare for and to coordinate these grants,” he said.

The state hasn’t been officially informed of any final funding decisions, Welch said, and he remains hopeful the CDC will find a way to continue funding the grants. If not, he doubts the state could pick up the tab. “Louisiana is a very poor state,” he said. “Unfortunately there’s not a whole lot of extra money sitting around.”

Tracking Pregnant Women

Federal grants also established a second tracking system called the U.S. Zika Pregnancy Registry, which tests and tracks pregnant women in the U.S. who live in or have traveled to Zika-infected areas. To date, the testing has revealed evidence of a Zika infection in more than 5,000 pregnant women in the U.S. About two thirds of them are in Puerto Rico, where the disease erupted last year. If no more money is budgeted for it, the funding for the program will end next July.

State labs will also soon be in a precarious position, Wroblewski said. Federal grants last year helped them get set up for Zika testing. But grantees were told in Atlanta not to expect new Zika-specific funding once their current money is spent. Instead, they should expect the same amount of money for testing mosquito-borne diseases that they received before the Zika outbreak.

Many previous health crises have been responded to with similar one-time bullets of funding, Wroblewski said. But unlike the 2014 Ebola outbreak or the 2009 swine flu epidemic, which came and went, Zika is likely to persist. Like its mosquito-borne cousins dengue and West Nile Virus, Zika may pop up every year.

“Zika is not something we can respond to this year and then move onto the next crisis,” she said. “It’s going to be something we pay attention to every mosquito season — and in travelers in the off season. We need more of a sustained response.”

It’s unclear whether the CDC will have much wiggle room in their budget in the coming year. The budget blueprint presented by President Donald Trump’s Office of Management and Budget in March proposed a 17.9 percent cut to the Department of Health and Human Services, which CDC falls under. The OMB did not return requests for comment.

Lori Freeman, executive director of the Association of Maternal and Child Health Programs, said she is in constant communication with federal and state health officials about how to plan for all potential fiscal scenarios. Funding is a perennial problem in public health, she said, and it distracts from efforts to keep the nation safe and healthy.

“In an ideal budget there would be funding built in for emergent infectious diseases. If you don’t use it, great, but just so we’re not constantly trying to figure out how to fund this surge capacity,” she said.

Chris Whelen, administrator of Hawaii’s state laboratory, said his lab, which has been handling Zika testing for his state as well as several U.S. territories, has enough remaining funding to continue that work through this year – as long as infections don’t spike and “there’s not much else going on.” Then he laughed.

“But there always is,” he said. “There’s always something going on. Usually multiple things going on. It’s a balancing act”