The decision by the U.S. Food and Drug Administration to grant provisional approval for eteplirsen, a new drug to treat Duchenne muscular dystrophy, is cause for celebration. The news, however, comes more than 200 days after the agency's original deadline. While we celebrate, we should not forget that the federal government's process for determining who might have a chance to live, and how quickly they'll get that chance, lacks transparency and too often operates under a seemingly arbitrary process.

Duchenne muscular dystrophy is a rare disease affecting mostly boys; almost all use wheelchairs by their teens and are dead by their 20s. Eteplirsen is the first, and currently only, treatment of its kind to slow the progression of this disease, an enormous stride forward in the fight against it.

According to FDA insiders, the agency views the price for approving a dangerous drug as far more damaging to the agency than delaying or rejecting a safe one. But for patients with no options and limited time, these delays come with a high cost.

Such is the likely fate of 17-year-old Cody. Cody was a candidate to participate in an eteplirsen clinical trial. But after a delay in the trial start date, Cody's ability to walk declined so much that he no longer met the baseline requirements to participate.

Unlike the 12 boys who did participate in the study, Cody has long since lost the ability to walk and now faces a series of life-threatening medical challenges. Even if he overcomes his current medical crises, he will never walk again.

Other children with the disease have also lost the ability to walk – and some have died – since the FDA's original Feb. 22 deadline (extended to May 26). The FDA made the correct decision, but it came too late for many families.

The bittersweet victory for eteplirsen offers an interesting contrast with the FDA's processes and procedures during the Ebola crisis of 2014. In August 2014, the FDA granted two requests to use ZMapp – a drug that had never been tested on humans – to treat two American aid workers, infected with the virus after caring for Ebola patients in Africa. Both are believed to have begun ZMapp treatments while still in Liberia. At the time, ZMapp wasn't approved for use in the U.S., but it appears the FDA granted permission for both to continue the treatment in the U.S. after they were already en route home. Fortunately, both patients survived after receiving the treatment.

Wondering how other sick and dying patients might also gain rapid access to investigational drugs, we sought public records from the FDA regarding how the agency decided to make ZMapp available to these patients. But, the FDA has refused to turn over documents that explain its internal approval processes for these particular patients. The law requires that the FDA evaluate potential risks and benefits of investigational drugs before they are offered to Americans. Yet, the FDA won't answer whether this evaluation even occurred before the two patients were home and receiving the treatment. We're not complaining that the patients were helped. On the contrary; we want to know how more people can access drugs before they are fully approved.

The Goldwater Institute has had to take the FDA to court to try to understand its decision-making process, which continues to be shrouded in secrecy two years later. How the FDA decides who will have access to potentially lifesaving investigational treatments should not be a government secret. All Americans have a right to know what their government is up to. This is especially true when we're asking how our government makes decisions about promising medical treatments when American lives hang in the balance.

In the case of Duchenne muscular dystrophy, dozens of the world's leading physicians and clinical researchers who specialize in the research and care of patients suffering from this disease had appealed to the FDA to support accelerated approval – in part because there was not a single adverse event associated with the drug over four years of testing and data.