This past week, the U.S. Justice Department denied New York state a waiver to import medical marijuana that could be used to treat severe forms of epilepsy in children like 11-year-old Mackenzie Kulawy of New York Mills.

This past week, the U.S. Justice Department denied New York state a waiver to import medical marijuana that could be used to treat severe forms of epilepsy in children like 11-year-old Mackenzie Kulawy of New York Mills.

It would be understated to call the denial disappointing. Despite unprecedented bipartisan support from all political corners at the state and federal level, Assistant U.S. Attorney General Peter J. Kadzik essentially said that granting a waiver would be contrary to the law.

The battle cannot end here. The shame of this is that the lives of Mackenzie and others like her hang in the balance because of state and federal bureaucracies that have created a knot of red tape that defies logic and human decency. Elected leaders who have fought this fight cannot turn back now. They must keep pushing because for some, time is running out.

Time already has run out for three children who have died since New York lawmakers approved the use of medical marijuana earlier this year to treat patients with conditions including AIDS, cancer and epilepsy. But instead of just moving ahead with a program now — other states have had programs in place for years — New York’s braintrusts decided they couldn’t get one going until 2016. That’s ridiculous.

Leaders, including Assemblyman Anthony Brindisi, D-Utica, said that the quickest way to get medical marijuana for Mackenzie and children like her would be to seek the federal waiver. New York’s two U.S. senators, Charles Schumer and Kirsten Gillibrand, along with Rep. Richard Hanna, R-Barneveld, and 17 of his House colleagues, wrote the Justice Department requesting the waiver.

In a letter dated Nov. 18, Assistant Attorney General Kadzik said the waiver was denied “because it would not comply with the requirements of the Food, Drug and Cosmetic Act and the Controlled Substances Act.” In other words, the FDA’s drug approval process must be followed. No exceptions.

Kadzik did suggest as an alternative the experimental drug, Epidiolex, which uses a pure derivative of marijuana, cannabidiol (CBD) — the same ingredient that’s been known to help others. Epidiolex is manufactured by GW Pharmaceuticals of Britain.

In a letter to New York state’s acting commissioner of health, Kadzik said the Justice Department supports research on Epidiolex’s potential capacity to treat multiple conditions, and in June 2014 FDA granted the drug Fast-Track designation and authorized its use under expanded access. This essentially provides access now “to treatments for patients with serious or immediately life-threatening diseases or conditions while preserving important protections for those patients.”

GW Pharmaceuticals says there are more than 300 patients now being treated through this program, including many patients with seizure disorders. In June, New York became the second state to enter into an agreement with GW (Georgia was the first) to develop clinical trials using Epidiolex.

The elephant in the room here is Big Pharma, which now has its clutches in something that more likely than not will be all about money — not improving or even saving little lives. Mackenzie’s grandmother, Patricia Reed, who retired to help care for her granddaughter, said the family is not familiar with Epidiolex and they are skeptical about it being the right way to go since there are so many unknowns. There are not even any assurances that Mackenzie could get into the program.

On the other hand, the marijuana strain Charlotte’s Web – approved by New York legislators – has proven to help a Colorado boy and others with the same condition as Mackenzie. A disappointed Brindisi said Friday that the best way now to help Mackenzie and others like her would be to fast-track New York’s program.

He’s right. We implore him and his colleagues to find a way to expedite implementation. We can’t wait until 2016 to help these children.