Radio reporter describes with personal detail what it's like to go to another state to buy legal cannabis for a medical condition

What is it like for Kentuckians to buy cannabis in another state under Gov. Andy Beshear's executive order? WUKY's Karyn Czar, who has one of the 21 medical conditions specified in the governor's order, a side effect of chemotherapy, got legal cannabis in Illinois, the only adjoining state where Kentuckians can buy it.

Karyn Czar

Czar was diagnosed in August with multiple myeloma, a form of blood cancer. "I began rounds of chemotherapy that left me exhausted, suffering from joint pain and tremors, and with a condition called neuropathy that causes my hands and feet to go numb," she reports. "I was sidelined from two things that I love, reporting in the field and performing on stage with local theater companies."

In the first report of a three-part series, Czar says she went to Illinois not just to find relief, but to "help any of you who, like me, have a condition that might be helped with medical cannabis. This first hurdle for me was getting over the stigma." Here's part of the conversation she had at the dispensary in Mount Vernon, Ill., with an employee identified only as Valerie:

Czar: "I couldn't sleep last night. I feel like I'm doing something that I shouldn't be doing."
Valerie: "Well, I felt like that at first, but then you have to recognize that it is legal in the state of Illinois. It is a benefit for people who do have cancer and other things wrong with them, and we're just going to follow the law and go with that."
Czar: "So, like where I'm losing the feeling somewhat in my hands and feet. So that the tremors and then sleep are my main things.”
Valerie: "Hearing that information I would suggest an indica. Then I would stick with a plain indica. I wouldn't add anything to it until you know what you were looking for. To be able to help the symptoms."

"Valerie takes me to a kiosk and pulls up a pie chart that lists dozens of medical conditions and symptoms," Czar reports. "She matches mine with the products she believes could offer relief."

Czar: "I'm just going to give you carte blanche to pick what you think I should try first."
Valerie: "So you said that gummy, right? You're interested in the gummy?
Czar: “Yes.”
Valerie: “So I would go back with that one and then the indica because of the symptoms. And then I kind of looked at my little wheel here, so I'm going to go with an indica so I can actually narrow myself down on the kiosk to what I need. I would stick with just a basic one."
Czar: "Okay."
Valerie: "Now, there's two different kinds here. I have one that's a live resin. Live resin is a live plant that has been crushed and frozen and everything extracted out of that, stems and all, that is then made into the gummy. Then I have your regular ones. The regular I call are just cured plants. They've taken that and fused it and made a regular gummy out of it."

The Thrive dispensary in Mount Vernon, Ill., has a wide range of products.

"What was most surprising was the array of products," Czar says. "Smokeable cannabis I expected. I also knew about edibles, but there were also drinks, snacks, lozenges, and topical creams. I got 10 gummies and a lotion. As I got ready to make my purchase, what I didn't expect was to be overcome with guilt. The stigma returned. My voice choked. . . . The tears were twofold. Of course, medical marijuana is still illegal here in Kentucky, and I would be transporting it across state lines. But I was also overwhelmed with the thought that this could help me.

"When we got back to the car, I took a fourth of the gummy, which was recommended and legal for me to do in Illinois, and used some of the topical cream on my left leg, which at this point had become completely numb up to my knee, and I was having to use a cane. About an hour later, when we stopped at a gas station, I got out of the car and the numbness had gone away. Now, it did not cure the neuropathy. However, it was back to a level to where I was able to tell when my foot was completely on the ground and I didn't need to use the cane."

Czar gives the legal basics: "Beshear's executive order offers pardons for having and using the drug if you meet certain criteria. You have to have an approved medical condition such as cancer, MS or PTSD, and have a signed note from a medical professional to prove it. Marijuana products must be purchased in a state that allows non-residents to buy it. And keep the receipt. Finally, you can't possess more than 8 ounces." More than that is a felony in Kentucky.

"There are caveats," Czar cautions. "Physicians can't give you advice on treatment or write a prescription. So I had to rely on trial and error until I figured out which doses and products work for me. You will have a positive result if you're asked to take a drug test. In my case, I might need a bone-marrow transplant, so I have to have a negative test if that moves forward."

She concludes, "Kentucky lawmakers are taking up medical marijuana again in the 2023 legislative session, but legalization efforts still face an uphill battle in the Republican-led Senate."

Young mother who had a rare Stage 4 cancer is now in remission

Anne Sydney Parrish and family (Photo by Amani Nichae) 

By Elizabeth Chapin
University of Kentucky

With around-the-clock feedings, diaper changes and sleepless nights, the weeks after bringing home a new baby can feel surreal and overwhelming.

After giving birth to a healthy baby girl on Aug. 21, 2020, Anne Sydney Parrish of Lexington was ready for the joys and challenges that come with adjusting to life with a newborn.

Then, Parrish’s world was turned upside down in a way she could have never imagined.

A day after having her daughter, Parrish noticed abdominal pain but figured it was an expected side effect. After all, she’d just had a cesarean section. But day after day, the pain continued. And worsened.

“I thought it was maybe gas or heartburn, and I took over-the-counter medications, but nothing really helped,” Parrish said. “It would almost be okay one day, and then the next the pain would be back.”

After one particularly bad morning, Parrish realized the pain wasn’t a normal part of postpartum recovery. Something wasn’t right.

Her brother-in-law, an emergency-room doctor, insisted she go to an ER for a CT scan. The scan showed a bowel obstruction and Parrish underwent emergency surgery the next morning to remove the mass from her colon.

Five days later the 33-year-old was diagnosed with Burkitt lymphoma, a rare type of blood cancer.

As a physician assistant, Parrish says she’d heard of Burkitt lymphoma, but didn’t know details of the diagnosis because it was so uncommon. And like many other patients, she couldn't keep herself from looking to the internet for more answers.

“The first things I read online were that ‘It's rare and very aggressive’,” Parrish said. “So I’m thinking I'm going to die.”

Burkitt lymphoma can be rapidly fatal if left untreated. Parrish needed to act fast.

Hours after her diagnosis, she and her husband were in an appointment at the UK HealthCare Markey Cancer Center, developing a plan for treatment. She had a positron emission tomography (PET) scan, which showed her lymphoma was stage 4, and it had spread throughout her abdomen.

Burkitt lymphoma is a type of b-cell lymphoma, a group of cancers that affect the immune system. Fast-growing b-cell lymphomas can be deadly because they release toxins that can damage vital organs and cause many other adverse effects. But when treated early and aggressively, outcomes for patients with Burkitt lymphoma are good, says Dr. Chaitanya Iragavarapu, a member of the hematology and blood-and-marrow transplant team at Markey, and part of Parrish's larger care team.

“With an exceptionally aggressive lymphoma in such an advanced stage, Mrs. Parrish needed to begin treatment immediately,” Iragavarapu said. “The good news for Mrs. Parrish is that Burkitt lymphoma does have high rates of remission for patients that start treatment right away.”

Parrish was admitted to Markey’s inpatient unit in the Albert B. Chandler Hospital four days after her diagnosis and just four weeks after the birth of her daughter. She stayed there for the next 15 days as she took intensive chemotherapy treatments daily.

For two weeks, she wasn’t able to hold her newborn, and it was also the longest she’d been away from her 4-year-old daughter. Parrish says it was hard on her and her family, but also a blessing.

“UK was the only hospital in the area that had the ability to treat my type of lymphoma because it was aggressive and required inpatient chemotherapy,” Parrish said. “Living in Lexington, I was so thankful that this level of care was right in my backyard. I know there are so many people that drive hours to come to Markey.”

Treatment lasted more than five months. Parrish had than 570 hours of chemotherapy, plus transfusions, lumbar punctures, bone-marrow biopsies, and near-constant CT scans, MRIs and ultrasounds.

Family and friends rallied to support her. Parrish’s mother and mother-in-law moved in to help care for her and her daughters.

“I remember after I got out of the hospital the first time, I was too weak to really do anything, even put my daughter to bed at night. I'd just had two surgeries, I had a C-section and then a colon resection, so I was swollen and distended and I was in a lot of pain,” Parrish said. “Honestly, I was so sick for the first six months of the baby's life that I was afraid she wouldn’t know who I was. I was in bed most of the time.”

The chemotherapy took an emotional and physical toll. But it was working.

Her last treatment was on Jan. 10, 2021. In February, she got the word that the cancer was in remission. Parrish says she was amazed that the treatment worked so well, and so quickly.

“It's like one of those things, where it was almost gone as quickly as it came on,” she said. “But gosh, my body went through so much in order to get the cancer to go away. But from the very beginning, I knew I was in good hands with the team at Markey. My doctors and nurses became like family.”

“Her primary oncologist and team at the time moved very, very quickly in terms of trying to get her started on the right chemotherapy combination,” said Iragavarapu. “And that essentially saved her life.”

Parrish’s latest scan shows no signs of cancer. Iragavarapu says Burkitt lymphoma, especially if it's responsive to chemotherapy, is unlikely to come back once in remission.

“Two years ago, my life changed in an instant. This experience just made me appreciate my health and my family a lot more than I did before,” Parrish said. “It's easy to get caught up in little things and in everyday life. It’s such a blessing to have my kids and my family.”

Senate President Stivers, long the key obstacle to medical marijuana in Kentucky, now says he sees 'a narrow path' for it

Senate President Robert Stivers

By Melissa Patrick
Kentucky Health News

The most important legislative opponent of legalizing medical marijuana in Kentucky said Friday that there is a "narrow path forward" for it. Senate President Robert Stivers said that the day after a medical-cannabis bill was filed in his chamber.

Senate Bill 107 has bipartisan sponsorship from 11 of the Senate's 38 members. It is a companion bill to House Bill 136, with 44 co-sponsors, including House Speaker David Osborne.

The House bill's prime sponsor, Rep. Jason Nemes, R-Louisville, told Tom Latek of Kentucky Today that most House Republicans support it and he is optimistic it will pass this year.

Stivers has said he wouldn't support a medical-marijuana bill without medical studies to back it up, but Friday he said it would be a balancing act to weigh the good and the bad of passing such a law.

"I know that Representative Nemes is trying hard and that he is modifying and amending, and I think there is a path, but it is a narrow path," he said.

Stivers said that in the 20-plus studies that have been delivered to him, he has found there are "statistically significant indicators" to use medical marijuana, such as nausea from chemotherapy, or spasticity in people with multiple sclerosis. But he cautioned that the studies were small and of short duration, and he said there are better medicines for glaucoma, an eye condition that many medical-cannabis supporters mention.

He also said that like all medicine, the good must outweigh the bad, noting "statistically significant indicators" in studies showing marijuana exposure to those under 25 hurts brain development; that prolonged exposure increases the likelihood of psychotic experiences; that it has 50 percent more carcinogens in it than tobacco; and can cause heart disease.

"So, it becomes a balancing test," he said. "And nobody has really come, in my opinion, to give us that good path forward."

He added, "Does anybody here in this chamber or the other chamber want to see individuals suffer? No, we don't. But we also don't want to exacerbate a drug problem or a problem with cancers, heart disease, anything like that."

The 160-page medical-marijuana bills offer a list of conditions for which cannabis can be prescribed, such as terminal illness and epilepsy, but don't limit prescribing to those conditions, and would allow physicians to prescribe marijuana to their patients as long as they have a "bona fide" relationship.

The 11 sponsors of SB 107 are Sens. C.B. Embry Jr., R-Morgantown; Perry Clark, D-Louisville; Denise Harper Angel, D-Louisville; Jimmy Higdon, R-Lebanon; Morgan McGarvey, D-Louisville; Gerald Neal, D-Louisville; Michael Nemes, R-Shepherdsville; Dennis Parrett; D-Elizabethtown; Reginald Thomas, D-Lexington; and Robin Webb, D-Grayson.

A medical-marijuana bill passed the House Judiciary Committee 16-1 last year, but with only five days left in the legislative session and opposition in the Senate, it did not get a vote in the full House.

This year's House bill awaits a hearing in the House Judiciary Committee. The Senate bill has not yet been placed in a committee.

Marijuana is legal medicine in 33 states and the District of Columbia. Recreational marijuana is legal in 10 states, most recently Illinois, the first bordering Kentucky.

If approved, the medical marijuana program would start Jan. 1, 2021.

Reporter writes about beating breast cancer, but perhaps most importantly, about first finding it: 'scheduling the mammogram'

One day each year, many newspapers go pink -- with pink ink or pink paper -- to increase awareness of breast cancer and support research to find a cure. This year, the Lexington Herald-Leader led its front page with a very personal a gripping story by staff writer Cheryl Truman about her breast cancer diagnosis, surgery and chemotherapy, and her struggle to get her life back and deal with troubling parts of the health-care system. The story is 1,928 words, and the most important may be at the end:

"Sometimes I will stop a moment and touch a flower, look for an extra few seconds at the farm view from my deck, brag about how the kids turned out. I am here to do that, and it has made all the difference," Truman writes. "Part of it is medicine, part luck. The first part was scheduling the mammogram."

Drug prices keep rising, with no end in sight

By Trudy Lieberman
Rural Health News Service

Recently a tweet from Lauren Sausser, a fine health reporter I know in South Carolina, caught my eye. “Crazy drug prices became personal. My dad will start Keytruda regimen on Friday, $15,000 per infusion, once every three weeks indefinitely.” The high cost of pharmaceuticals had hit home!

Her 61-year-old father, Jim McCallister, who lives in Spartanburg, S.C., had been diagnosed with a melanoma discovered during a routine skin exam a few weeks earlier. It had spread to his lungs. Doctors recommended the drug, which uses the body’s immune system to attack cancer cells and has showed promise in treating aggressive melanomas.

McCallister’s employer-provided insurance is paying for most of his treatment, and the family is looking into Merck’s co-pay program. In the meantime, McCallister faces several thousand dollars of out-of-pocket costs.

McCallister may be lucky cost-wise. But the fact remains: Somebody is paying for the high cost of Keytruda and other new drugs coming on the market. Sausser said her dad asked if insurance would cover the drug. “The doctor told him they would find some way.”

That’s the nub of the dilemma. For many like McCallister, there may be help, often from the drug companies themselves in the form of patient assistance plans. Remember drug company AstraZeneca’s ads for some of its costly drugs: “AstraZeneca may be able to help”? Sometimes state or local government programs, private charities, nonprofit agencies, or coupon programs help patients pay for their drugs. Patients who can’t get help from any of those sources often go without.

None of the assistance programs, however, attack the underlying prices for the drugs, which pharmaceutical makers can set according to what the market will bear. They can pretty much do whatever they want with little push back from those who end up paying the bills – governments, insurers and patients. The U.S. has no cost controls, and government doesn’t negotiate drug prices the way many other countries do.

So the price of commonly prescribed drugs like the EpiPen, a shot that stops life-threatening allergic reactions, has risen to more than $600 for two pens. In 2009 two pens cost $100. The price for Abilify, an antipsychotic, has risen 113 percent between 2007 and 2014, and the cholesterol-lowering drug Crestor has climbed 103 percent over the same time period, according to The Campaign for Sustainable Rx Pricing, a group of employers, insurers, and unions that are trying to raise public awareness of high drug prices.

That helps explain why Medicare recently reported its spending on prescription drugs increased more than 17 percent in 2014 even though the number of claims from the program’s 38 million beneficiaries rose only 3 percent.

Medicare’s prescription drug law was never meant to pay all a person’s drug expenses. This year once a beneficiary and her drug plan have paid $3,310 for medicines, she reaches the coverage gap where she must pay the cost of most of her drugs. If she spends, out of her own pocket, another $4,850 for drugs this calendar year, she qualifies for catastrophic coverage and pays only 5 percent of all her remaining drugs for the year.

The trouble is that with prices so high, it’s easy to end up in the coverage gap paying out-of-pocket. Even protection offered by catastrophic coverage may not be enough. That’s especially true for people taking high-priced specialty drugs.

In 2013, about 3 million people were in this predicament. “Not a lot of people pay above the threshold, but those who do can pay through the nose,” says Tricia Neuman, senior vice president of the Kaiser Family Foundation.

Escalating drug prices affect everyone – even those not taking expensive drugs or not on Medicare. High drug prices affect all insurance premiums sooner or later.

Not long ago I spotted a letter to the editor in USA Today from Heather Block, age 53, who has Stage 4 breast cancer. She was calling for patients to organize and build a network to help craft solutions for the problem of skyrocketing drug prices.

I talked to Block about this. Her zeal and interest in organizing patients reminded me of the early days of the consumer movement in the 1960s when citizens organized to pass legislation to make the marketplace safer and more fair. With drugs, Block says, it’s hard to organize people because of drug assistance programs that take the sting out of prices and make patients less willing to work against the companies, the presence of disease advocacy groups funded by the pharmaceutical industry, and a general reluctance to speak up for fear of jeopardizing their own health and survival.

She’s asking for consumers to share their stories at this email: h3ath3rblock@gmail.com.

What problems are you having paying for prescription drugs? Write to Trudy at trudy.lieberman@gmail.com.

Elizabethtown doctors who paid millions to settle claims of bill-padding are sued by chemotherapy patients

"Eight former patients or their estates have sued the Elizabethtown cancer doctors who paid the government $3.7 million last June to settle claims they extended chemotherapy treatments to pad their bills," Andrew Wolfson reports for The Courier-Journal. "The ex-patients or their families say in a suit filed in Hardin Circuit Court that the clinic negligently treated them by diluting treatment drugs and extending treatment periods, which allowed them to bill more to Medicaid and other programs." As a result, the plaintiffs say, they suffered unnecessary pain and anguish, and those who died did so prematurely.

The physicians whom the suit identifies as owners of the clinic, Yusuf Deshmukh and Rafiq Rahman, are under investigation by the Kentucky Board of Medical Licensure. "The clinic's owners agreed to pay $3,739,325 last June to resolve allegations that they submitted false claims for payment to the Medicare, Medicaid and the military's medical provider for extending the duration of chemotherapy infusion treatment to patients, and for inappropriately billing office visits for infusion therapy," Wolfson reports.