5 Star
.
June 2 - June 4
.
.

Workers, back in April, plant romaine lettuce at the EG Richter Family Farm in Puyallup, Wash. Lettuce contaminated with E. coli was found to come from farms in the Yuma, Ariz., area, but farms in other parts of the country like the Richter's were not affected. (Ted S. Warren/AP)

Five people have died and nearly 200 people from nearly three dozen states have been sickened by E. coli in a growing outbreak that has so far stumped federal investigators.

The Centers for Disease Control and Prevention announced the death tally Friday, more than two months after the first illnesses occurred in mid-March. Although investigators have determined that E. coli came from contaminated romaine lettuce that were grown in Arizona's Yuma region near the border to Southern California, the Food and Drug Administration has not been able to link the outbreak to one farm, processor or distributor, Scott Gottlieb, the agency's commissioner, and Stephen Ostroff, the deputy commissioner for foods and veterinary medicine, said in an update Thursday.

With the tainted vegetables now off the shelves and the growing season over, the FDA may never crack the case, frustrating consumer advocates who have called on the agency to issue rules that would speed up future investigations of foodborne illnesses, The Washington Post's Caitlin Dewey reported.

The CDC said 197 people have been sickened, nearly half of whom were hospitalized. Some told officials that they did not eat romaine lettuce but became sick after close contact with someone who ate contaminated vegetables, the CDC said. Twenty-six developed hemolytic uremic syndrome, a type of kidney failure that can be life-threatening to people with weak immune systems, such as young children and the elderly.

A majority of those who have been affected come from California, where one death was reported, and Pennsylvania. The four other deaths were reported in Arkansas, Minnesota and New York, according to the CDC.

Last month, the Canadian government announced that six of its citizens were also sickened with Escherichia coli with “similar genetic fingerprint” with those reported in the United States. Two of the six told officials that they traveled across the border before they became sick. Three became infected in Canada. Canadian officials, though, said that the risk to their citizens are low.

The FDA initially said that only bagged and pre-chopped romaine lettuce that have been distributed to retailers across the country were contaminated with E. coli, but a group of inmates at a prison in Alaska also became sick after eating whole-head lettuce.

.
.
.
.

Adding new diseases to screening rosters inevitably means adding to the cost of tests for newborns, which run about 0 to 0, depending on the state. The tests are typically covered by insurers or Medicaid, but funding in some states comes from the health department’s budget. Adding SMA would cost anywhere between 10 cents and , according to a report issued by the US government in March.

ALD, meanwhile, was recommended for addition to the federal list of screenings by the HHS secretary in 2015, but states have been slow to adopt the change. Only a handful test for it today.

“It’s a nightmare,” says Maria Kefalas, a patient advocate and founder of the Calliope Joy Foundation, which raises money to help children with leukodystrophy. “Lobbying states one by one is ridiculous.” Her daughter was diagnosed at age two with a rare genetic brain disorder called metachromatic leukodystrophy. An experimental gene therapy available at a single site in Milan, Italy, has saved children with the otherwise terminal disease—but only if it’s given early enough. London-based Orchard Therapeutics is working on commercializing the therapy.

To know or not to know

Not everyone thinks screening newborns for more diseases is a good idea. The results could cause extra anxiety for parents, and there’s the possibility of false positives.

A pilot program in Massachusetts that’s testing newborns for SMA, for example, showed that a baby had the disease—but a few months later it turned out to be a false alarm.

“Can you imagine what that couple went through?” says Kathryn Swoboda, a pediatric neurologist at Massachusetts General Hospital, who is involved in the pilot program. “It’s really tough on families.”

Not all parents want to find out if their child will go on to develop a serious disease, especially if, as in some cases, its onset is years away. SMA is a prime example: there are five types, and while most cases appear within the first six to 18 months of life, one type doesn’t come on until adulthood. Similarly, onset for cerebral ALD, which the Bluebird therapy is designed to treat, can occur when a child is anywhere between two and 10 years old. Swoboda says knowing this could make it harder for parents to bond with a child.

Still, people like Kefalas think the benefits often outweigh the risks. “There are so many ramifications of having this information at birth,” she says, “but for some diseases it seems like a no-brainer.”