“At this point, I’ve given up. I’ve given up any hope of getting help from the state through legal channels. I’ll just get what my wife needs illegally.”
The Jersey City resident, who did not want to be identified, spoke these words from a waiting room last week at Memorial Sloan-Kettering Cancer Center, where his wife was undergoing her second round of chemotherapy.
On Nov. 15, just days after Hurricane Sandy and barely two weeks before Thanksgiving, this resident’s wife was diagnosed with peritoneal cancer, a rare form of the disease that affects the thin tissue that lines the abdominal organs.
Unable to undergo surgery immediately, her doctors first tried to shrink her tumors with a nine-session round of chemotherapy that would then be followed with surgery and a second round of cancer-fighting drugs.
This course of treatment proved brutal and debilitating. Almost immediately, her husband said recently, her weight dropped from about 107 pounds to about 97. She was nauseous and unable to eat.
“I was getting concerned because, of course, all of this was going to be followed by surgery and we had to be sure she would be strong enough to go through with that,” said her husband.
On Nov. 15, just days after Hurricane Sandy and barely two weeks before Thanksgiving, she was diagnosed with peritoneal cancer.
By law, his wife was required to “develop an ongoing relationship” with a doctor who specializes in palliative care. This relationship must be established over the course of four in-person appointments, which this couple did with palliative specialist Dr. Perry Stein of Montclair. Since medical insurance won’t cover such experimental treatment, the couple had to pay for these appointments out-of-pocket, according to the husband.
“That first appointment was 175 bucks. After that, the appointments were 100 bucks each. We then had to pay to get fingerprinted. And that was, like, $75.”
‘I was trying to do this thing right’
Shortly thereafter, his wife received an account number and they were optimistic that she would soon be able to get a prescription.
The state required both of them to get identification cards that cost $205.40 each. By law, his wife is required to have an ID card as the patient, and he is required to have one as her caretaker.
“Here we are, we’ve spent all this money out of pocket, but my wife has yet to receive a medical marijuana prescription,” he said. “I mean, it’s not like I can’t get some pot the illegal way. But I was trying to do this thing right. I was trying to do it legally, doing it the way the laws of New Jersey say you’re supposed to. But I feel like we’ve just been scammed and robbed. And what’s worse, we were scammed and robbed by our own state.”
Since all of the payments that were made were done using a credit card, he is now in the process, he said, of getting some of his money reimbursed under the argument that he did not get the service he had paid for.
As his wife continues her second round of chemo, she is still dealing with severe nausea and has not regained much weight since her diagnosis.
If recent news accounts are anything to go by, this couple’s experience with New Jersey’s Medical Marijuana Program is fairly typical.
Passed in 2009 just before Gov. Christopher Christie took office, New Jersey’s Medical Marijuana Program received bipartisan support from state lawmakers who believed the law would help people with severe life-threatening and debilitating diseases like cancer, ALS, HIV-AIDS, and other conditions.
But in the past month several patients who were supposed to be helped by the law have been speaking out about their experiences ever since Christie told reporters during a March press conference there was “no crisis” in the Medical Marijuana Program. Yet, waiting lists are months long for a prescription.
Part of the problem is that there is only one “compassionate care center” that has so far received final approval from the state to offer marijuana prescriptions. That center, the Greenleaf Compassionate Care Center in Montclair, has assisted 114 patients since it opened in December, according to the Star-Ledger.
The operators of Greenleaf did not respond to several e-mails and phone calls seeking comment regarding their waiting lists.
A separate center, Foundation Harmony, which was slated to open in Secaucus, has yet to receive its final certification from the state to open and begin operating.
“It’s been very frustrating for patients,” said Ken Wolski, CEO of the New Jersey chapter of the Coalition for Medical Marijuana, who is also a registered nurse. “We’ve heard terrible stories of people jumping through hoops to get registered and getting an ID card, but then not being able to get marijuana to treat their symptoms. And many of these people are just suffering needlessly.”
A spokesperson for the Department of Health and Human Services did not return two phone calls seeking comment.
Christie has defended the state’s program by saying that he wants to avoid some of the problems other states have had. Arizona has had confidentiality problems, and there has been some confusion around who can and cannot grow medical marijuana at home under Arizona’s medical marijuana law.
An audit of Colorado’s medical marijuana program found that it took about 23 months for alternative care centers to be approved, but then once approved, some of the facilities were found to have information in their applications that should have disqualified them from approval.
Eighteen states currently have medical marijuana programs, according to Wolski, 12 of which allow approved and certified patients to grow their own marijuana for the purposes of medical use. A home cultivation provision was taken out of the New Jersey law in 2009.
“As soon as I saw the health department’s regulations back in 2010, I knew this program was not going to work,” said Wolski. “All of the [prescribed] marijuana has to come from six alternative treatment centers. These centers were given the go-ahead in March of 2011. But since they were selected by the health department, only one, Greenleaf, has been able to open. Some of the centers are having trouble getting their sites approved due to community opposition because they interfered with local zoning rules.”
The vetting process is rigorous. All employees at the compassionate care centers – even the most junior employees – must fill out a 60-page application. In some cases applicants have been rejects, according to Wolski, due to the past criminal conduct of relatives. This process, he added, has delayed most of the alternative treatment centers from opening their doors and serving the needs of sick patients.
“It’s really a shame how this has turned out,” said the Jersey City resident. “This is something that really would have been beneficial for my wife.”
E-mail E. Assata Wright at firstname.lastname@example.org.