Read stories from patients

Thank you to the patients who shared their stories of being left behind. Please share your story with us if you feel left behind.

I am a 54-year-old mother and grandmother, and I live just outside of Houston, Texas. I have had four corrective jaw surgeries over several years starting in 2009 and ended up in pain management, where the doctor gave me 14 different pills (including morphine, dilaudid, soma, and hydromorphone) that I had to take four times a day. They just made me feel worse.

I used cannabis recreationally, and it didn’t take long to discover that cannabis actually helped with the pain and nausea. That meant I could skip the pills and their awful side effects. I was “fired” from pain management twice after testing positive for cannabis. Looking back on it, that probably saved my life.

I was diagnosed with fibromyalgia a few years ago, so the chronic pain I was already experiencing from my jaw was compounded by this debilitating pain that attacks my body in different ways, sometimes at the same time. I find relief with cannabis – but only so much relief can be found in a prohibition state with no regulation, testing, etc. I risk my health, safety, and freedom every month to obtain medicine with no idea of its potency and no way to tell whether it is contaminated. I have never been arrested before, but it is a real fear every month.

The black market is thriving here in Texas, so the cannabis I get is priced quite high. As a person on disability, I have to stretch every penny every month. I hear about medicines that really help people with my conditions in the legal states as well as patient pricing that is far more reasonable – but those are out of reach to me. With the continued expansion of legalization and medical freedoms in this country, it simultaneously breaks my heart and angers me that the politicians in the state of Texas seem to have little to no compassion when it comes to allowing me to put the medicine I want in my body, but they have no problem with licensed doctors passing out pills that only mask the real problem and create additional health problems. There is something really wrong with this picture.
 - M

I am a cannabis patient who has lived all of my life in Rhode Island. I am severely disabled and have multiple rare medical conditions that have kept me from being able to sustain any meaningful form of employment for most of my adult life. I undergo surgery at least once a year and sometimes more, including rebuilding both ankles, bilateral knee surgery, two spinal cord surgeries, and three brain surgeries. I live every single moment of every single day in pain.

From an early age, I relied on opiates and other prescription medication to keep the pain I experienced at a tolerable level. They had benefits, but I suffered many side effects. One day in 2010, one of my doctors encouraged me to try cannabis, and it changed my life dramatically. I was very happy to find that cannabis was effective at managing my daily pain and much of my surgical pain, though most hospitals will not let me use cannabis while I am in-patient. With the help of cannabis, I was able to completely discontinue opiates for 6 years. I was able to engage in a weekly physical therapy program, became stronger, and was able to help others by starting a support group in my area for people living with connective tissue disorders. Rhode Island first introduced the state’s medical marijuana bill in 2006. Since then, it has gone through many changes and now resembles a moneymaker for the state, not a service for the sick.

The Rhode Island Medical Marijuana program has changed from a compassionate, patient-driven program to one that is more and more concerned with creating tax dollars. Little concern is shown for patients as cost increases leave many with no way to afford a medicine they could easily afford just a couple years ago. The state now charnes higher patient licensing fees, even for disabled people in the program, and charges those who grow at home a plant tag fee.

The state also requires caregivers who grow on behalf of patients to register their grow location with the state, obtain certification from the Department of Business Regulation, pay exorbitant fees, complete excessive forms, agree to a loss of privacy, and adhere to rules that change frequently with little notice. As a result, many caregivers stopped growing on behalf of patients. There are fewer caregivers in the state, and every year, more rules are added to limit caregivers and home cultivation even more. This forces patients like me to make use of the three compassion centers, where we give up our privacy and pay more for heavily taxed medicine that might not even work.

The compassion centers in Rhode Island are able to set whatever prices they want and are not required to test any of the products they sell for contaminants like mold and pesticides. The products on the shelves at all three centers in Rhode Island change frequently. There is no guarantee that a medicine that worked for me last week will be available next week, or ever again. The compassion centers are not registered as medical facilities and therefore do not have to follow strict accessibility laws. Even if I were able to afford medicine from a compassion center, due to mobility issues, I would have a hard time getting in any of the current compassion center buildings. All have issues with accessibility and parking.

I survive on Social Security disability payments and my husband’s income. I have no financial assistance for cannabis. My health insurance doesn’t help defray the cost of it, and there are no state or federal programs to help me afford it. We have maxed out our credit cards, borrowed money from family, and gone into debt trying to afford the medication I need to live my life. When I had a caregiver, I was able to afford my medication without putting us into debt or supplementing with opiate medication. My caregiver was a family friend who could no longer act in that role due to privacy concerns when Rhode Island added a regulation requiring caregivers to register their grow location with the state. I tried unsuccessfully to find a new caregiver and heard that many had stopped participating in the program for similar reasons.

Due to the exorbitant prices at the compassion centers and lack of caregivers in Rhode Island, I have had to start using opiates again to help manage the constant pain. Cannabis worked much better for me, and I was able to function much better when I had reliable access to it. Unlike the pills, cannabis also helps my mood. It better helps me ignore the pain, gives me energy, and helps my creativity, all without adding to my nausea or giving me a headache. In fact, cannabis is one of the only medications I’ve ever used successfully for the migraines I’ve lived with all my life. With cannabis, I can spend more time helping others. Without it, I spend most of my time trying to get myself dressed.

For those who are chronically ill in Rhode Island, the process of getting and paying for a medical cannabis card is an enormous barrier. Those who manage to get over that barrier are forced to buy from compassion centers that are not required to maintain affordable pricing and that themselves have to spend an outrageous $500,000 dollars for a compassion center license, which explains why the medication costs so much. The state government has turned the compassionate use program into a moneymaker for the general fund and treats patients as consumers instead of sick people trying to stay alive.
 - Krista Brack