It's time to take Lyme seriously

Even if you do not contract Lyme disease, you must worry about Lyme disease – bug spray, looking for ticks in children, wear long pants in your socks.

The most annoying in the persistence of Lyme disease is that the disease is an extremely problem solved. In fact, essentially at been solved – for dogs, who can be immunized against Lyme disease.

It will take two things to end Lyme disease: first, adequate funding for research and prevention, and second, a determination to take the problem seriously.

The truth is that Lyme disease has never got the respect it deserves.

When a human vaccine against Lyme had been approved in 1998, the federal review committee for the vaccine review had formulated a lukewarm recommendation and that insurers did not cover it. An expert questioned the need for a drug against a disease commonly associated with the wooded suburbs of the north-east of the country, calling it a vaccine against "yuppies". This drug was eventually removed by its manufacturer, leaving Lyme a dubious distinction as the only widespread disease habit of having an approved human vaccine, but this is no longer the case.

Related: Know your ticks and how to avoid them

Other solutions proposed by scientists to reduce the population of ticks spreading Lyme disease – deer hunting, for example – usually fall flat. Even if Lyme continues to expand its geographical reach, the public's priorities are clear: when you have the choice between Bambi or a bacterium, Bambi almost always wins.

And federal funding is not strong enough, according to a congressional report tabled last year, which criticized the government's financial commitment to research on Lyme, concluding that spending had "not increased because the problem is aggravated.

For today's special section, the Globe has contacted Lyme researchers in Greater Boston and across the medical community, many of whom have spent decades educating the public about the disease and looking for strategies. effective treatment and prevention. They do not expect miracles: Lyme research will not discount spending on major epidemics and global health crises, and they are grateful for recent increases in funding from federal health organizations. They know that mass killing of deer is unlikely.

But as the disease continues to spread, its costs to the health care system – and to the economy as a whole, when workers are absent from work because of Lyme disease symptoms – have increased . These costs make it possible to take Lyme disease much more seriously as a serious threat to public health.

According to many Lyme experts, the first step is to facilitate the development of a new human vaccine and to ensure a warmer reception than that of the 1998 vaccine. Further research is also needed on the rare cases of patients with post-treatment symptoms and a better understanding of the impact of Lyme disease on children. Finally, according to the researchers, a focus on the ticks themselves – tiny creatures often invaded by major diseases – could generate public benefits that go far beyond just Lyme disease.

Named for the bucolic town of Lyme, Connecticut, where it was first described in the late 1970s, Lyme disease is spread by ticks, tiny blood-sucking insects that have come in deer repopulated in New England after the mid-twentieth century. . Raised on deer, ticks catch the infection in the mouse and can then pass it on to hikers, gardeners or children playing in the yard.

Lyme disease affects approximately 300,000 Americans each year and CDC data suggest that it is particularly prevalent among whites (92.8% of confirmed and probable cases in 2017) and men (57.9%). ). Potential symptoms include swollen joints, fever, fatigue and, in 70-80% of patients, a bullseye-like rash around the tick bite. The vast majority of patients recover with short-term antibiotic therapy. A small minority report symptoms in the longer term. Since the discovery of the disease in the late 1970s, two deaths related to Lyme's carditis – when the disease has reached the heart – have been reported in Massachusetts, according to the Department of Public Health.

The disease also has an economic impact; a 2015 study would cost between $ 712 million and $ 1.3 billion a year.

Another disturbing consequence of the spread of Lyme disease is less obvious, but perhaps more insidious: since post-treatment symptoms that include a minority of patients are so poorly understood, some have called for long-term antibiotic treatments. term, although studies have been conducted. found that long-term antibiotic treatment was ineffective and could actually harm patients and the community at large. The use of antibiotics may not only have serious side effects in some patients, but the World Health Organization calls the overuse of antibiotics "one of the greatest threats to global health, food security and development" because it contributes to antibiotic resistance. The failure of the resolution of a public health problem – the post-treatment symptoms of Lyme disease – aggravates another, overuse of antibiotics.

Related: Stat | Can a new Lyme disease vaccine overcome a history of mistrust and failure?

In 2017, research on Lyme disease received about $ 28 million from the National Institutes of Health and $ 11 million from the CDC, according to the report presented last year in Congress. The expenditures take the form of grants and technical assistance. The CDC manages a panel of samples that companies developing tests can request; a new series of tests approved in July that simplify the testing process were developed in part through the use of the CDC panel. NIH funds preliminary studies of potential vaccines, including new approaches such as vaccinating mice to intercept the disease.

The two organizations also fund research on hundreds of other diseases, which inevitably creates a balance between competing priorities. Advocates for more research on Lyme point out that the funding allocated to the flu is $ 263 million from the NIH and $ 187 million from the CDC, more than 10 times the funding allocated to Lyme.

But the comparison goes both ways. In the United States, the flu has killed 79,000 people during the 2017-2018 influenza season, and the virus has killed between 250 and 1,100 people a year in Massachusetts alone.

Even Lyme researchers have expressed mixed views on whether funding is adequate. Sam Telford, professor of infectious diseases and global health in Tufts who has been working on Lyme disease since the 1980s, has no problem with the CDC or the NIH: "I would like to have more money, but they both supported the transmission of ticks. search at a level that suits their load. They have all kinds of other disease problems that they have to work on, they have to allocate money according to the burden of public health. "

Anthony Fauci, director of the infectious diseases section at the NIH, said spending is driven by public health needs and opportunities – the agency will increase funding if promising research opportunities arise. In the case of Lyme, he said, if the vaccines at the beginning of research were promising, the agency would be ready to increase the expenses to support them. He sees support for the vaccine as a top priority.

"Our efforts right now are going into the initial phase of different candidate vaccines," he said. "We are really trying to restart a wider vaccination effort."

The researchers added that in addition to a new vaccine, questions remained unanswered about the infection itself. "Understanding how it works and how it boosts the immune system is an important area of ​​research that focuses specifically on some post-infection symptoms that can be quite severe or even persistent," said Allen Steere of MGH, who discovered Lyme.

Then there are children: even though they represent a disproportionate share of Lyme cases, the studies are rarely adapted to this population, said Lise Nigrovic, emergency pediatrician at Boston Children's Hospital, a member of the HHS committee that wrote the report to Congress.

"Problems related to the effectiveness of diagnoses in children need to be investigated," she said.

Look: it's time to take Lyme seriously

ALWAYS, GOVERNMENT FUNDING will remain important, a number of Lyme researchers have told the Globe that, in the immediate future, the most critical thing that the federal government and the states can do is not to spend their own money. money, but rather to facilitate private sector investment.

An investment in particular: in the coming year, Valneva, a French pharmaceutical company, will have to decide to commit at least $ 300 million in the Phase III trials of its Lyme disease vaccine, VLA15, which will involve test it on thousands of subjects. If the company starts the trial and it succeeds, in four to five years, consumers will have access to the first vaccine against Lyme disease since the original vaccine was removed from the market in 2002. Unlike LYMErix, the new drug will be available for sale. children from the age of 5 years at the time of authorization to exercise or shortly thereafter, and finally for children as early as the age of 2 years.

Although the tests have been promising so far and the same company has successfully developed a vaccine against Japanese encephalitis, an investment of this size is not a sure thing. The delay in the development of vaccines against Lyme disease was precedent: PasteurMérieux-Connaught has developed a vaccine against Lyme disease, ImuLyme, which was tested in the late 1990s and gave good results but did not ask for a license to distribute it.

They must be assured of recovering their investment. According to Stanley Plotkin, a prominent vaccine scientist, one way to do this is for state public health agencies to make a commitment in advance to recommend a safe vaccine, if necessary.

For the company to invest, he said, "they will have to be convinced that the people potentially targeted by the vaccination will actually use the vaccine," he said; commitments made by public health authorities "would indicate that a vaccine would be used".

Thomas Lingelbach, CEO of Valneva, said that the winning recommendations, the Federal Advisory Committee on Immunization Practices, and when it is declared, are a key part of its strategy for continuation of its clinical trials. "Any recommendation on the back of this data is exactly what we expect and expect," he said.

Related: Is "Chronic Lyme Disease" Real?

In Massachusetts, the state could make a vaccine available through its trust fund for the purchase of vaccines, which funds standard vaccinations for children. Currently, current law requires that a new drug be previously recommended by ACIP.

This federal advisory council had made an unusually lukewarm recommendation for the first Lyme vaccine in 1998. At the time, it had only stated that its use "should be considered", while the fact of recommending it outright would Too many people who need the vaccine to apply for it anyway, forcing providers to pay unjustified costs. (A doctor was concerned that people who "pay a lot for their Nikes and their Spirit and shop at LL Bean's will have no consideration in terms of cost-effectiveness when they want a vaccine because they are going to Cape Cod . ")

Hopefully, the worsening of the disease over the past two decades will convince the committee to exercise less restraint if the new vaccine passes through the FDA approval process. A positive recommendation would also make the vaccine available to children at the expense of the government.

Finally, even if an effective vaccine against Lyme disease would only be a partial victory for public health, warn researchers – and would not eliminate the need for further research.

Deer ticks are often not only afflicted with Lyme disease, but also babesiosis and anaplasmosis. In rarer cases, they may carry tularemia, Rocky Mountain spotted fever, Borrelia miyamotoi, and Powassan virus.

An article in 2011 raised fears that a Lyme disease vaccine could even turn against us by offering hikers, gardeners and other people exposed to deer ticks a false sense of security: "It is to fear that people who receive a vaccine against Lyme disease will not protect themselves against tick bites and, therefore, may be at higher risk of acquiring these other pathogens. "

The Powassan virus, in particular, could be more frightening than the Lyme disease virus. It contains no vaccine or treatment and causes death in 10 to 15% of cases; Among the victims is Lyn Snow, a renowned Maine painter who died in Powassan in 2013, who has drawn attention to this disease. Although the number of cases in the United States is still minimal, a 2017 article estimates that it has increased by 671% over the last 18 years. "With a significant increase in the number of Powassan cases over the past decade, there is an urgent need for further research and better understanding of the virus, vector and disease," warned the paper.

Some local researchers have recommended to intensify research on ticks themselves.

Linden Hu, a professor of molecular biology and microbiology at Tufts who studies Lyme, said the government should aim to "control the sources, as it has done for malaria." In the middle of the 20th century, the United States attacked malaria. cure the disease, but aiming at the wearer. The United States has virtually eliminated malaria, which has already killed hundreds of Americans every year, significantly reducing the mosquito population.

Controlling ticks does not necessarily mean killing deer – although this is still an option, especially in remote areas like Martha's Vineyard. One way to prevent infections, which has been supported by NIH for research, would be to develop a vaccine that would respond to tick saliva after a bite, blocking transmission of the disease and potentially eliminating multiple tick-borne diseases. .

Related: "The forest is not safe": How Lyme disease sowed fear in the heart of this nature lover

Another approach, which is currently the subject of an NIH-funded study, would be to vaccinate mice with foods containing an oral vaccine. There are also other out of the ordinary solutions: for example, a research team is studying the possibility of creating genetically modified mice immunized against Lyme disease.

Telford, who is involved in the genetic modification program, said that when he heard the Lyme advocates seek a commitment from the Manhattan Project, he felt it was worthwhile to aim higher and higher. attack the root cause.

"As a public health specialist, I have a long-term perspective and would prefer the Manhattan project: how to reduce the number of ticks and make our communities a better place for our children and their children?