Frustrated Patients Disrupted While Iowa Figures Out How To Make Medicinal Marijuana Practical
When Logan Edwards returned home to Davenport in 2008 after his deployment in Iraq as a Marine, he was anything but the same.
Photo submitted by Logan Edwards
Having just turned 21, he started using alcohol to cope with his anxiety, insomnia and nightmares. Suffering from post-traumatic stress disorder, better known by its initials PTSD, Edwards drank every day for six months before seeking help. By the time he got it, it was almost too late.
After a very long journey with many trials and errors and finding no real relief, Edwards, now 28, said he found a way to live his life in a functional and productive manner through the advice of a Vietnam vet. That advice: smoke weed.
Edwards said his life immediately started to take a change for the better once he started smoking marijuana; however, he found a major problem in this: Iowa doesn’t allow it.
Iowa’s Medical Cannabidiol Act that became law in July of 2014 allowed the use of cannabidiol, or CBD, to treat intractable epilepsy.
At first glance, the law seemed like a major breakthrough for Iowans who had been advocating for medical marijuana, but the act leaves out two important pieces to the story: where the caregivers and patients can obtain the CBD and what is being done for those who feel the need for medical marijuana but do not have epilepsy.
State Sen. Joe Bolkcom, D-Iowa City
Changes to address those issues in the law don’t appear to be coming anytime soon. “The Republicans have no plans to bring it up as an issue,” Sen. Joe Bolkcom, D-Iowa City, the floor manager of a bill that would loosen access to CBD, said. “I think it will be an uphill battle next Legislature.”
The current law put the University of Iowa in charge of researching the effects of CBD on epileptic patients. The drug CBD derives from the cannabis plant but contains no THC, the part of cannabis that gives the high effect that opponents of any marijuana use focus on.
GW Pharmaceuticals, the company that provides the CBD for the UI’s research has been researching medicinal marijuana for more than 16 years and is in charge of a nationwide study for this research. The Food and Drug Administration and the Drug Enforcement Administration have approved 450 children to participate in the Expanded Access Program, also know as the Compassionate Use.
Dr. Charuta Joshi, a clinical associate professor of pediatrics with specialties in neurology and epilepsy, is the principal researcher in the study at the UI. She said 17 people are participating but that the research team is still recruiting. She was unwilling to give information on the early results of the study because it is still in progress.
Steven Schultz, vice president of international relations for GW Pharmaceuticals, said results thus far have been optimistic.
Schultz said CBD has been “effective in reducing total seizures in these patients with a very tolerable side effect profile.”
But with only 71 registration cards issued for patients in Iowa, more people are waiting on the Legislature to help. All 71 of these patients have to cross state lines to obtain the CBD and break federal laws by transporting back to Iowa.
The cards are issued by the Iowa Department of Public Health, in collaboration with the Iowa Department of Transportation. The Department of Transportation is involved in case one of the patients or caregivers is stopped while driving.
Photo submitted by Logan Edwards
Actor Chuck Norris visited Logan Edward’s unit while Edwards, seated lower right, was in the Marines in Iraq. (Editor’s note: A correction on a previous version of this photo was made on 11/1/15 on which person is Logan Edwards.)
At one point Edwards spent around three months driving back and forth from Iowa to Colorado to purchase four to six ounces of marijuana each trip for his personal use.
This system initially was working for him, but the fear of jail became too overwhelming he said. He decided to move to Denver, Colorado, in 2014.
“Things have just gotten much, much better,” Edwards said. “I’m doing great here. My biggest complaint is having to fly or drive back to Iowa to see my daughter.”
IOWA LEGISLATIVE PROSPECTS
Senate File 484 was the next step in legislation proposed to solve these issues and make medical marijuana a reality in Iowa. The Iowa Senate passed the bill on April 15, but the likelihood of it being passed in the House next year is low.
This bill would add on to the previous Medical Cannabidiol Act, allowing the production and sale of marijuana for medicinal purposes within the state, and adds several “debilitating medical conditions” that can be treated with medicinal marijuana, such as cancer, HIV/AIDS, multiple sclerosis, PTSD and other illness causing severe and chronic pain.
“I’ve worked closely with patients and their families who suffer with chronic and debilitating conditions who have wanted to have access to cannabis as medicine,” Bolkcom said.
Opponents of the bill Bolkcom drafted said it has too many flaws.
State Sen. Mark Chelgren, R-Ottumwa
Sen. Mark Chelgren, R-Ottumwa, said that while he supports medicinal marijuana, “I am not so arrogant to think more about what should go in people body’s more than they or the doctors do.” He said he only supports “any products that are considered to be medicinal in power.” And that, “until it goes through the medical proofs and is tested, its not medicine.”
Chelgren said Bolkcom’s bill is part of a political agenda and accused Bolkcom of grandstanding. “He wants to get points for re-election more than he actually wants to help,” Chelgren said.
One of the reasons for this is that Chelgren said the bill “completely ignored federal laws.” He is referring to the federal government’s legal classification of marijuana, an issue Sen. Michael Breitbach, R-Strawberry Point, also found troublesome.
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The federal government considers cannabis to be a schedule 1 drug by, meaning that it has no medicinal value and has a high potential for abuse. “Most doctors and labs can’t even do research on it without losing their license,” Breitbach said.
More research and experiments could be done for a better understanding of the effects and how to prescribe cannabis if the federal government were to reclassify it as a schedule 2 drug, Breitbach said. “I don’t feel we will see widespread meaningful research until that happens,” he said.
State Sen. Michael Breitbach, R-Strawberry Point
While Iowa can reclassify the drug itself, as the other 23 states that have legalized medical marijuana have, some do not support this route because the federal government could prosecute.
Breitbach said the Obama Administration has said it won’t prosecute but he said he doesn’t know if the next president will take a different stance.
Bolkcom said, “It’s hard to imagine that anybody running to be president of the United States would undermine the work that’s been done in over 20 states.”
Breitbach’s other issues with the new bill are that it does not allow for someone to be in charge of dosages, that other states have not been able to sufficiently control THC levels in oils, and that the bill refers to PTSD as a condition that can be treated with medical marijuana, which he doesn’t support.
The bill was rushed to get passed, not leaving enough time to discuss these issues and attempt to fix them. “We can and will make a better bill than the one that passed the Senate this year,” Breitbach said.
GAUGING PUBLIC SUPPORT
A Des Moines Register Iowa Poll earlier this year found that 70 percent of Iowan adults support legalizing marijuana for medical purposes. When changes matching the polling will be made is hard to answer.
Until the legislation can find a way to agree on how to make this work, people like Edwards will continue to wait, or move.
Edwards works 50 to 60 hours a week in Colorado while coming to Iowa to see his daughter and family as often as possible. He said he knows marijuana is not a cure for PTSD but that, “it absolutely helps give sufferers a livable life instead of the constant anxiety and depression.”
Undated photo submitted by Maria LaFrance
Quincy La France and his mother Maria La France, founder of Iowans for Medical Marijuana. Quincy has suffered from severe seizures since age 2.
Parents like Maria La France, founder of Iowans for Medical Marijuana have seen a glimmer of hope for her son, Quincy, who has suffered from severe seizures since age 2. He is now 14.
Quincy is taking a natural based cannabis oil that is grown in Colorado. “He isn’t seizure-free yet, but his seizures have reduced. He is recovering faster, and he id doing better in school,” La France said.
As a parent and a member of Iowans for Medical Marijuana, she said she would like to have access to marijuana locally. “If medical cannabis was legalized, we would have more flexibility to change dosing amounts and try different strains,” she said.
Photo submitted by Maria LaFrance
Quincy La France
She said this battle is frustrating. “It’s morally wrong for lawmakers to not allow this treatment when lives can be saved.”
“I think it’s important to look at cannabis as a plant that has tremendous potential for helping, and anything can be abused,” La France said. “I don’t want to encourage young people to go out and do it,” she said about using marijuana, “but there are people who really need it.”
“This option should be available to anyone who is sick and has found this to be helpful for their condition.”
NEWS QUIZ: MARIJUANA IN THE 50 STATES
This IowaWatch story was republished by The Hawk Eye (Burlington, IA), The Gazette (Cedar Rapids, IA) and Iowa City Press-Citizen and featured by the Pew Charitable Trust’s Stateline editor’s picks under IowaWatch’s mission of sharing stories with media partners.
Wide Variety On How States Handle Medicinal Marijuana: News21 Report
News 21 Report: America’s Weed Rush
Federal Restrictions Put Clamp On Medicinal Marijuana Research: News21 report
Research on marijuana’s potential for medicinal use has been hampered for years by federal restrictions, even though nearly half of the states and the District of Columbia have legalized medical marijuana in some form. News21 report.
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Doctors in iowa who prescribe cbd oil for epileptic seizures
Doctors affiliated with Mercy Cedar Rapids and The Iowa Clinic are refusing to sign paperwork their patients need to register for the Iowa Department of Public Health’s medical cannabis program. Iowa law requires applicants to obtain their doctor’s signature attesting that the patient has a “qualifying debilitating medical condition.” But the law stipulates that health care practitioners have “no duty to provide” written confirmation of the patient’s diagnosis.
Mercy Cedar Rapids appears to have instructed its 503 physicians not to sign the IDPH paperwork, according to two sources with qualifying conditions, who receive health care at different facilities in that network. Most if not all of the 250-plus health care providers at The Iowa Clinic, a doctor-owned group in the Des Moines area, are also refusing to sign medical cannabis card applications.
Without cooperation from a primary care provider, Iowans cannot start the process of receiving authorization to use cannabidiol legally. The number of patients affected by their health care group’s policies is unknown but potentially large. Mercy Cedar Rapids handled 451,400 outpatient visits last year at offices around Iowa’s second largest metro area. The Iowa Clinic averages 450,000 visits annually, serving about 148,000 unique patients across its central Iowa locations.
The state’s public health department has approved at least 283 Medical Cannabidiol Registration Cards for patients or their caregivers since a new law went into effect last May. Whereas the previous law applied only to certain seizure disorders, House File 524, passed during the final hours of the legislature’s 2017 session, allows Iowans to obtain cannabidiol if they suffer from any of the following “debilitating medical conditions”:
• Cancer (if the treatment or underlying condition produces severe or chronic pain, nausea or severe vomiting, cachexia or severe wasting)
• multiple sclerosis with severe and persistent muscle spasms
• seizures, including those characteristic of epilepsy
• AIDS or HIV
• Crohn’s disease
• Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease
• any terminal illness with a probable life expectancy of under one year, if the illness or its treatment produces one or more of the following: severe or chronic pain, nausea or severe vomiting; cachexia or severe wasting
• Parkinson’s disease
• untreatable pain, defined as “any pain whose cause cannot be removed and, according to generally accepted medical practice, the full range of pain management modalities appropriate for the patient has been used without adequate result or with intolerable side effects”
“FLATLY TOLD NO MERCY PHYSICIAN IN CEDAR RAPIDS WOULD SIGN OFF”
When one lifelong Mercy Cedar Rapids patient in his 30s took the IDPH form to his primary care provider, he “was flatly told no Mercy physician in Cedar Rapids would sign off on it,” he told me. This source, who preferred not to be identified by name, was frustrated, since “All that my doctor had to do was sign a form stating I have a qualifying diagnosis. They are not being asked to prescribe medical cannabis.”
Indeed, the IDPH application makes clear that the health care provider is not writing a prescription for cannibidiol (see page 4). Providers are simply confirming they have a professional relationship with the applicant and have been involved in diagnosing and treating that patient’s debilitating medical condition. Incomplete forms lacking a physician’s signature “will not be accepted.”
Yet when this patient asked to be referred to another doctor who would sign the paperwork, he “was told no one in the Mercy network would do it.”
Karen Vander Sanden, public relations specialist for Mercy Cedar Rapids, told Bleeding Heartland on February 7,
Mercy has not prohibited its physicians from signing the cards. We have recommended that they wait until further guidance is provided by the state and our physician-led Quality Committee has completed its review and outlined a formal policy and process that will be needed to appropriately address the new law and support our patients.
My source characterized that explanation as a “shell game.” His primary care provider and her nurse assured him that no one in Mercy’s local network would “sign a qualifying conditions form, and that there was no one in Cedar Rapids who would.”
A second source also found the official statement unconvincing. His doctor of more than fourteen years, Dr. Ann Soenen at the Mercy Vernon Village clinic, told him higher-ups had instructed all Mercy Cedar Rapids physicians not to sign the form attesting to a qualifying medical condition. “She asked her director in an e-mail while I was in her office,” he told me. “It’s all because there is no dispensary yet in Iowa. They won’t have a problem with it when at least one opens.” His understanding from his doctor was that the organization doesn’t want patients to commit a federal crime by obtaining medical cannabis from another state.
The first cannibidiol products manufactured in Iowa under the new law “will be available at Department licensed dispensaries only, starting in late 2018,” according to a December 2017 statement from the IDPH.
Note: the dozens of Iowa clinics with the Mercy name outside the Cedar Rapids area are part of the Mercy Health Network, a separate organization based in Des Moines. Janell Pittman, who handles communications for that medical group, told me in September and affirmed last month, “We greatly value the professional expertise of our physicians and their collective ability to make appropriate medical judgments. MHN does not have policies in place restricting physicians’ prescribing of medical cannabidiol to their patients, in accordance with their independent professional medical judgment.”
For the record, no Iowa doctors prescribe cannabis derivatives. Jason Karimi, who runs the Iowa Patients for Medical Marijuana Facebook page, explained, “The word ‘prescribe’ should not be in any discussions. Prescriptions mean FDA approval. Nobody in the country has medical marijuana prescriptions. The laws only allow recommendations. There’s a big difference, and it’s important.”
I have confirmed that some Mercy Health Network primary care providers have signed the IDPH form certifying a qualifying medical condition. I encourage Iowans who have tried to navigate this process with a Mercy physician to contact me confidentially.
“DENYING THE CARDS MAY BE SENDING THE WRONG MESSAGE TO PATIENTS”
Connie Norgart of Urbandale, a retired registered nurse, has advocated for legalizing medical cannabis for years. Due to post-polio syndrome, which causes severe muscle pain, she has been on opioids since 1989. Various pain medications have caused serious side effects, including fatigue, side effects, and bleeding ulcers.
Norgart took her IDPH paperwork to Dr. Melissa Thompson at The Iowa Clinic’s West Des Moines office, she told me during a telephone interview in January. She’s been seeing this family doctor for approximately sixteen years. But Thompson told Norgart she couldn’t sign the application because they “were telling the physicians not to sign them.”
Thompson did not return repeated calls seeking comment. The Iowa Clinic’s marketing officer Amy Hilmes provided this statement on February 13:
At this time, The Iowa Clinic does not have a formal policy on the Healthcare Practitioner Certification required on the patient application for a Medical Cannabidiol (CBD) Registration Card. We are awaiting further guidance and development of the program by the State of Iowa. Therefore, most of our physicians are not comfortable proceeding. Once additional information has been received, we will begin the process of studying both CBD and THC (tetrahydrocannabinol) for use in medical therapy.
Norgart told me the same day that in a recent phone call, Thompson explained she was not “comfortable” with signing the IDPH form because of a line stating that the health care provider had educated the patient. That language on the form (page 5) reads as follows: “I have provided this patient with the explanatory information provided by the Iowa Department of Public Health (found on the Department’s website at this web address: https://idph.iowa.gov/Medical- Cannabidiol-Act-Registration-Card-Program/Medical-Cannabidiol-Education-Material) on the therapeutic use of medical cannabidiol and the possible risks, benefits, and side effects of the proposed treatment.”
Asked what further information The Iowa Clinic physicians are seeking, Hilmes pointed to two passages on the Office of Medical Cannabidiol website:
The Iowa Department of Public Health (IDPH) is working to identify tasks and develop timelines to implement chapter 124E, as well as the resources needed to accomplish those tasks. [. ]
The Iowa Department of Public Health (IDPH) is currently working to develop the rules that govern the implementation of the remainder of the Act.
Hilmes added in the same February 14 e-mail, “The Iowa Clinic physicians and providers are allowed to use their independent medical judgement in the management of their patients. Many providers are awaiting scientific peer-reviewed literature guiding appropriate usage, as is appropriate with any new treatment.”
It’s hard for patients to understand why a longtime, trusted doctor won’t certify a diagnosis. Even if the health care provider has doubts about the value of medical cannabis, whether the patient has one of the qualifying medical conditions is not debatable.
I asked a number of patients who have registered for the state’s program, or unsuccessfully attempted to apply, why they are seeking a medical cannabis card now. Many said they wanted to avoid unnecessary bureaucratic delays once the IDPH licenses a dispensary. “I know it won’t help me until December but I’ll be in line,” was a typical comment.
Others wanted to convey the scope of demand for alternatives to traditional medications: “I wanted to get my card so they could have a better picture of the amount of people that would use this program.” Some expressed concern that policy-makers might draw the wrong conclusions: “If we don’t have anyone getting cards, then politicians who are against this whole thing can point to that and say there isn’t a need.” Many advocates working on this issue hope to persuade state lawmakers to expand the current law to cover more health conditions and more potent cannabis derivatives than CBD oil with 3 percent or less THC.
Norgart acknowledged that Iowans in her situation “can’t get anything” legally yet. “But denying the cards may be sending the wrong message to patients” and others who keep track of medical cannabis registrations, she told me. “A lot of Iowans won’t get the service they should be getting” if their doctors won’t cooperate.
In the Des Moines area, The Iowa Clinic facilities are sometimes confused with UnityPoint Health. That group has hundreds of providers working in about 50 central Iowa locations, along with clinics in a dozen other cities across the state.
Communications staffer Amy Varcoe told me on January 29, “UnityPoint Health, including Blank Children’s Hospital allow each individual provider to make the decision based on each patient.” She denied that the organization discourages physicians from signing IDPH forms. On the other hand, Varcoe asserted that “until the new law is implemented, only seizures are covered.” That’s not accurate; the state has approved medical cannabis cards for scores of Iowans who suffer from one or more of the other qualifying conditions.
The same statement from Varcoe noted, “UnityPoint Health still recognizes medical cannabis is not FDA approved and remains a schedule I drug recognized as drugs with no current accepted medical use and a high potential for abuse.” Karimi of Iowa Patients for Medical Marijuana countered, “since these products are explicitly intrastate only, and not interstate, FDA approval is irrelevant to our state law. [. ] FDA approval is only required for interstate marketing.” He recommended this November 2017 article by Carl Olsen, a longtime activist who has studied the relevant federal statutes and case law.
Varcoe emphasized in a January 30 message that UnityPoint does not “in any way” discourage providers from doing what they feel is best for the patient.
While I confirmed that at least a few UnityPoint physicians have signed IDPH forms, patients in some communities have reportedly had trouble finding a UnityPoint doctor to certify their diagnosis. I hope to follow up on that soon and encourage Iowans to contact me regarding any relevant experiences with health care providers.
Polly Carver-Kimm, communications director for the IPDH, shared a graphic showing how many Iowans approved for medical cannabis cards suffer from each of the qualifying conditions. I also asked how many physicians from various health care groups had signed the application forms, but Carver-Kimm replied, “We do not collect information that would allow us to identify the certifying health care practitioners by health system, so we are unable to provide that type of detail requested.”