LEICESTER - U.S. Attorney General Jeff Sessions’ plan to end the use of medical marijuana has Lisa and Laurence Cole concerned.

The couple credits medical cannabis solutions they have administered to their 8-year-old daughter, Maddie, for two years for her improved health and a reduction in the number and severity of seizures she experiences. Before the treatment, she would have 75 to more than 100 seizures in one day. Now, the number is 15 to 40.

They are not sure what would happen if the federal government takes action to stop the use of medical marijuana currently allowed in Massachusetts and in 29 other states and the District of Columbia.

Marijuana is classified as a Schedule 1 drug, the same as heroin, which means it is illegal under federal law, even if states allow it.

President Obama’s administration took an approach of nonresistance regarding the state laws. During his campaign, President Trump said marijuana laws, like most other matters, should be decided at the state level.

But Sessions, a strong anti-marijuana advocate, would like to undo the Rohrabacher-Farr amendment that Congress passed in 2014 prohibiting the U.S. Department of Justice from spending money to interfere with state medical marijuana laws.

“It is concerning for sure. It’s a frightening prospect for families like mine,” Mrs. Cole said. “If the medical marijuana programs were to go away, you’re basically excluding every patient under the age of 18 from their medicine.”

Ms. Cole said she is also concerned with the state’s medical marijuana law that voters passed in 2012. She was eager to have her daughter participate because she had heard about Charlotte Figi, a 5-year-old whose 300 grand mal seizures a week were greatly reduced after being treated with a strain of marijuana that has no psychoactivity.

It took a couple of years before dispensaries were up and running in Massachusetts, and until August 2015, before the Coles got the required approval for Maddie to begin using medical cannabis. Getting the substance, however, has not been easy.

Shortly after passage of the law, the state promised that 97 percent of the state’s population would live within 30 miles of a medical marijuana dispensary. But today there are only 11 medical marijuana dispensaries in operation. Several have received provisional certificates of registration from the state, including 13 in Worcester County (four in the city of Worcester), but they still must get the final certificate of registration to begin selling.

The right strain

Ms. Cole said she travels 45 minutes to an hour to dispensaries in Northampton or Newton to purchase dried flowers from different strains of cannabis to make into a tincture that she administers orally to her daughter. After extracting the cannabinoids from the flower, she takes it to a state-approved marijuana testing lab in Framingham to determine the properties that came from the flower, the desired dilution ratio and how to dose it accordingly.

She uses safflower or a medium-chain triglyceride oil to dilute the sticky, tar-like substance. The biggest expense is the purchase of the cannabis flower, which costs about $1,000 for a two-to three month supply.

She has learned that all parts of the marijuana plant are beneficial. They keep a solution made from the THC to rub on Maddie's gums which has the ability to stop clusters of seizures and the more severe seizures. But her usual medicine comes from THCA, which is THC in it’s acid form that does not give the euphoric feeling that THC does. The THCA seems to make Maddie more cognizant and has improved her motor coordination, her mother said.

“It’s been very all over the place because we’re experimenting with different strains. We still have not stumbled upon the right cannabis profile that Maddie’s body needs,” she said. “At the end of the day, you don’t really have a lot of guidance from doctors.”

Ms. Cole said a lot of hospitals have policies in place that forbid their physicians from making recommendations for using medical marijuana.

“This journey should not be as difficult as it is,” she said. “It was a fight to get access to the medicine. Now that we have access, I can’t just go to the dispensary and buy a bottle of medicine to treat my child. I have to make it, test it myself, and collect the data so I can figure out the proper dosage and how my daughter responds. And hope that we get lucky.”

Catherine S. Bromberg, spokeswoman for the Massachusetts Health & Hospital Association, said because of the federal prohibitions, member hospitals, including most if not all of those in the Worcester area, must follow federal rules or risk losing certification to care for patients under Medicare and Medicaid standards.

“Although the Obama administration indicated that it would not prosecute providers who allow use based on state law allowances, recent notices from the Trump Administration have indicated an opposite position,” she said. “Until this conflict is clarified, (MHHA) has advised our members to be considerate of the federal prohibitions when developing internal policies.”

Another problem that Ms. Cole sees with Massachusetts' law is that, unlike with adults where certification from one state-licensed physician is required, a pediatrician’s certification is also required for children.

The Coles and parents of more than 100 children under the age of 18 have traveled from all over the state to Taunton to get certification from Dr. Eric Ruby, an outspoken advocate of medical marijuana even though its use is opposed by the American Academy of Pediatrics.

Dr. Ruby said state law is overly restrictive. Only a pediatrician should be required for pediatric patients. He said each doctor has to fill out a 27-page pamphlet for the state. The law in its current form, he said, is not working for several reasons, including that there are not enough dispensaries and the ones currently in operation do not provide enough options for children.

“The medical marijuana program is not answering the needs of the disabled children,” Dr. Ruby said.

Nichole R. Snow, executive director of Massachusetts Patient Advocacy Alliance, which drafted the medical marijuana initiative, said dozens of more dispensaries are set to open soon, which likely means a wider range of available strains suitable for children like Maddie. Part of the delay in openings is because of a change in the application process, she said.

Benefits and risks

Dr. Ruby said he vehemently disagrees with the MHHA and other professionals and organizations that say there is no evidence of the effectiveness of marijuana for chronic pain, seizures and other ailments. He said studies are not prevalent because of the federal guidelines, but the drug’s usefulness has been proven in studies in California, Germany, the United Kingdom, and in Israel, a world leader in cannabis research for the past decade. Israel is also among a handful of countries that run a government-sponsored medical marijuana program.

Dr. Ruby became convinced of the plant’s usefulness, particularly to alleviate extreme pain, after his son, Ethan, who had a successful company on Wall Street, became paralyzed in 2000 after being struck by a car.

He became addicted to opiates that doctors prescribed for his pain in the first two years of treatment. He eventually began using marijuana in various forms to manage his pain. In 2012, he moved to Colorado where he could legally use cannabis. He ended up buying a grow facility, which he has since moved to Connecticut.

Dr. Ruby said the state's medical marijuana law needs to be changed to make it easier for patients to access the medicine and for physicians to help patients. The state Department of Public Health is currently reviewing comments from two public hearings about proposed changes before issuing the final proposed amendments to the medical marijuana law. He said medical schools will eventually have updated courses on the benefits of marijuana, rather than focusing on the legal and medical risks.

Attorney General Sessions calls marijuana a gateway drug and says stopping its use will alleviate the opioid epidemic. But Dr. Ruby and others disagree. He said if people can use marijuana instead of the prescribed pain medications, fewer people would become addicted to opioids.

Like Mrs. Cole, Dr. Ruby said he is concerned by the attorney general's plan to stop the use of medical marijuana.

Ms. Snow, of the Patient Advocacy Alliance, said she is not as concerned since several Republicans and Democrats in Congress on Thursday reintroduced legislation that would allow medical marijuana in states that legalize it. The Compassionate Access, Research Expansion and Respect States Act does not legalize marijuana in all states, but amends the federal law to allow states to implement their own policies regarding marijuana without fear of federal prosecution.