How One Family is Fighting to Promote Cannabis As Healthcare

 

On the first day of February 2019, I attended Seattle’s annual CannaCon for the 2nd year in a row. That day, I came across one of the most compelling cannabis stories I have heard yet. The story of one bright and charismatic little girl named Madeline (Maddie) Holt highlights why we all should support medical marijuana treatments and fight to make this medicine available to applicable patients. While medical marijuana is already becoming more widely accepted across the American population, there are still many obstacles within the healthcare system that require review and reform of existing marijuana laws. In the meantime, there are ways for individual patients to take charge of their personal healthcare and advocate for their own access to cannabis.

In this article, I will share how I met Maddie and her incredible family and provide a brief review of how Maddie’s medical history supports increased backing for full-plant cannabis medicine. Then, I will highlight some of the key insights shared by her mother, Meagan, about the most effective ways to advocate for the best healthcare solutions for oneself and one’s family.


CannaCon: Connecting Members of the Cannabis Community

CannaCon is one of many cannabis industry trade shows and has been hosted annually in Seattle for the past several years. In 2018, I had attended CannaCon with an open mind but no focused intention for my visit. Sure, I had casually expressed interest to my husband and friends about the possibility of working within the cannabis industry, but I hadn’t completed any substantive research or figured out exactly how I wanted to contribute within the industry. I interacted with vendors and even spoke to some cannabis recruiters, but was overall passive about turning my little “dream” into a reality. Like always, I was playing it safe.

But, at some point between 2018 and 2019, I decided that enough was enough and that I just needed to create my own space within the industry. I had become pretty outspoken about the potential benefits of cannabis, and I wanted to share this message with more people! So, in December 2018, I decided to officially pursue a career where I can write personal insights and stories about how medical and recreational marijuana use can help people to regain control of their physical and mental health.

CannaCon: Seattle’s Annual Cannabis Industry Event

CannaCon: Seattle’s Annual Cannabis Industry Event

Alas, in 2019, I attended Seattle CannaCon with substantially more intention than the year before. I walked into the Convention Center ballroom knowing that while I didn’t have much formal writing or cannabis experience, I have a passion for cannabis and an independent platform through which I can share the most compelling cannabis stories I could find. I also had a fire in my belly.

I’m so grateful that I was in that room, on that day, with that mission because I met another woman who clearly has a fire lit in her belly, too. And when Meagan Holt introduced me to her daughter, Maddie, I understood the reason behind her passion. As you read through Maddie’s story below, I’m sure you will come to see that Maddie has the same fire within her, as well. Like her mother, she is one tough cookie.  

After taking the time to share Maddie’s story with me, Meagan let me know that she was scheduled to speak at one of CannaCon’s seminars later that day. Luckily, I had purchased a ticket that permitted me to see one of the lectures put on that day. I had originally planned to visit the seminar for Washington State Congresswoman Suzan DelBene, but decided to scrap that plan and view Meagan’s speech instead. And I’m so glad I did because Meagan shared some real, practical advice on how patients and caregivers can talk to their doctors about cannabis and seize greater control of their healthcare.

Screen Shot 2019-03-21 at 2.04.11 PM.png

The Hand That Heals

This year, Meagan and her partner, Chad, hosted a booth at CannaCon to promote their blog and business, The Hand That Heals. I was drawn to their booth because they weren’t advertising any flashy new product or service that they were selling; no, instead, they were sharing a real message about the improved health and happiness that their family has realized through cannabis.

As soon as I started to speak with Meagan and Chad, it was clear that this family’s story was so impactful and that their message would be able to help so many. Like so many people in the cannabis industry, their family has a close, personal connection to cannabis.


Maddie’s Story

Meagan’s youngest daughter, Maddie, was diagnosed with Zellweger’s Syndrome when she was just an infant. Zellweger’s Syndrome is a congenital, terminal disease for which there is no cure. When new infants are diagnosed with Zellweger’s, doctors typically tell parents to anticipate that the child will likely not live past one year of age. However, there are some exceptional people who can defy medical odds, and Maddie Holt is one of these people. Today, Maddie is 6 years old. While Maddie is deaf, blind, and completely dependent on a feeding tube, she has incredibly learned to communicate with friends and family through sign language.

Maddie in March of 2019.

Maddie in March of 2019.

When Maddie was 2, she started to suffer from daily grand mal seizures and lost many of the communication skills that she had obtained up to that point. Meagan and Maddie were at the hospital often, but doctors told Meagan that they were out of options; there was no way to help ease Maddie’s seizures or prolong her life. To help with the pain, doctors prescribed Maddie up to 26 opioid pharmaceuticals but advised Meagan that the medications would not save her daughter.

But, as Meagan puts it, her “mama bear” set in. Meagan was not open to giving up, and so she decided to take matters into her own hands. In the darkest hour, at a time when she was also researching possible funeral homes for her daughter, Meagan tried a new approach: she started Googling other options for treating Zellweger’s disease when she stumbled across the concept of whole plant cannabis therapy. Meagan then decided to expose Maddie to full-plant cannabis. Meagan has said that when she discovered this potential solution, she decided to implement it just so that Maddie would be able to pass away a little more peacefully. However, Meagan’s decision changed the trajectory of Maddie’s life.

After just one exposure to a cannabis cola (the flowering component of the cannabis plant), Maddie went seizure-free for 8 days. And even when she did experience an occasional seizure, exposing Maddie to the cannabis cola would soothe her almost immediately.

Today, Maddie is alive and opioid-free as result of a regular cannabis regimen. According to Meagan, “Cannabis is so much more than just a medicine for Maddie. It is what allows her to break through this shell and show people what she can really do.”

As Maddie continued her cannabis regimen, she was able to wean off of the 26 opioid prescriptions that the doctors had prescribed to her to help manage the pain. The cannabis itself also provided relief to Maddie when she was going through painful opioid withdrawals.

Ever since the day that Meagan realized that her daughter’s health can be drastically improved through cannabis, she has become a grassroots cannabis advocate focused on protecting patient rights, particularly the rights of children like Maddie who traditionally haven’t had a voice.

Since then, Meagan’s efforts have directly contributed to new rules allowing cannabis therapy to be administered to minors in two public hospitals, one in Snohomish County and the other in King County, Washington. Meagan has also been asked to serve as an advisor at Seattle Children’s hospital. This is a substantial achievement; in a decade where cannabis regulations are difficult to navigate due to an ever-changing enigma of conflicting state and federal laws, Meagan’s ability to traverse red tape and institute a patient-first cannabis procedure is notable. Her hard work to advocate for cannabis therapy as part of healthcare will serve patients for years and decades to come.

Meagan has said that she is not a cannabis advocate because she wants to be, but because she had to be. As a mother who recognized that cannabis can improve her daughter’s wellbeing, she sees herself as just doing what every mom is supposed to do: making sure that her child has the best quality of life possible. Meagan’s mission is also to inspire other people to stand up and speak their truth and highlight that at the end of the day, proper access to the best health care is a human right.

Mother and Daughter

Meagan knows her daughter and her needs so well. Meagan has a deep understanding of how to interpret her daughter's thoughts and feelings through her body language, including eye movement, noises, some speech, and sign language. Meagan allows her daughter to express herself and does not assume she understands Maddie’s internal thoughts. Rather, she pays close attention to what her daughter says with her hands and body language and then verbalizes what her daughter cannot. If that’s not what love is, than what is it?

Maddie is resilient, just like her mom. Most of us don’t experience a debilitating disease until we are much older in life, or never at all. But Maddie has battled through this since the day she was born, and she’s still smiling and offering hope to the community around her.  

Maddie is a smart, spunky little girl with a very cute sense of humor. I watched a YouTube video, produced by Special Books by Special Kids, where Maddie stole a kiss from the interviewer, Chris Ulmer. Check out the full video below for a chance to witness this sweet moment. In the video, Meagan explains that despite Maddie’s complex medical history, her daughter reminds her that she is a normal little girl who likes positive attention and likes to flirt now and again!

It’s no doubt that other than stealing kisses, Maddie’s tenacity has helped her to stay strong despite the seemingly insurmountable hardship that was placed on her at birth. In fact, it is clear that throughout their journey, neither Meagan or Maddie have considered surrendering to the typical fate of Maddie’s illness. Rather, they garner strength from one another. Their relationship is one of the sweetest parent/child relationships that I have encountered in my life.

Changing the Perception of Cannabis within the Medical Industry


During her CannaCon lecture, which took place the same day that I met her, Meagan Holt provided valuable insight to parents who are advocating for medically complex children and facing bureaucratic hurdles in the face of archaic medical marijuana laws.

Meagan’s lecture was titled, “Changing the Perception of Cannabis within the Medical Industry”. As Meagan stood at the podium in the lecture hall, she donned a trendy pink floral dress and a glittery moto jacket. She evoked professionalism, sparkle, rock and roll, and the strength of a mother’s power.

Challenges to Accessing Cannabis Therapy

The purpose of Meagan’s lecture was to highlight that without a doubt, cannabis therapy belongs in our healthcare system and that patients and parents have the right to ask for it. You might be thinking, but wait - isn’t medical cannabis legal in most states? Yes… ish. While medical cannabis is legal, this doesn’t mean that doctors are authorized to provide this treatment in standard, publically funded hospitals. Additionally, doctors and lawmakers are not always on board with offering cannabis therapy to children. This can become a substantial hurdle to overcome for a child who needs access to cannabis, just like Maddie did.

For Meagan, it was a struggle to get doctors to understand that Maddie was benefiting from cannabis and would need consistent exposure to the plant moving forward. Not only did Meagan have to complete all of the research to highlight why cannabis therapy would be the right approach for treating her daughter’s disease, but she also had to fight against more systemic, or bureaucratic, obstacles.

martin-brosy-758535-unsplash.jpg

Throughout Maddie’s medical history, it has been clear to Meagan the risk of malpractice has contributed to the maintenance of the current status quo in healthcare. Even in light of new research that highlights the medicinal properties of cannabis, doctors are not inclined to recommend it to their patients for fear of malpractice, litigation, or risk to their reputation.

The reality of the situation is that unfortunately, doctors do not have enough formal education on the benefits of the cannabis plant. As a result of over a century of cannabis prohibition, cannabis medicine and the specifics of the body’s endocannabinoid system are not taught in most medical schools. For more information about this topic, see my prior blog post here about how certain private companies are working to improve doctor education around cannabis for the purposes of improving patient care.

For the Holt family, when it came time to convincing doctors that Maddie truly benefited from cannabis therapy, Meagan would use video clips to hold medical professionals accountable; she would show them videos of Maddie calming down after being exposed to a cannabis cola and then discuss what they witnessed on the video directly afterward. Through this method, Meagan was able to get some doctors to articulate that yes, they did notice the positive impacts that cannabis was having on Maddie’s health. This was a milestone that did not come easily.

Even though the process of getting her daughter’s doctors to sign off on cannabis therapy was not painless, Meagan has taken the perspective that it is always the best approach to continually convey respect and empathy to the doctors and nurses that are overseeing a patient’s care. And while this is, logically, the right and moral approach, can you imagine how hard this would be to maintain if the experts you are talking to are unsure of how to help your daughter?

We all have a right to the best healthcare, and oftentimes that means the use of cannabis, as was certainly the case for Maddie. Therefore, it’s important that parents and cannabis proponents work to continue to reduce the stigma of cannabis within our healthcare system because this can directly correlate to saving lives.


Advocating for Full-Plant Cannabis Medicine

As Meagan explained in her lecture, cannabis provided her daughter so much relief and brought her family new hope. For Maddie, exposure to a cannabis cola, complete with the full array of cannabinoids and terpenes, was able to calm Maddie down and give her peace.

Maddie’s health has improved throughout her life due to exposure to a cannabis cola (full flowering plant).

Maddie’s health has improved throughout her life due to exposure to a cannabis cola (full flowering plant).

The fact that Maddie benefits from full-plant medicine is relevant at this moment in time. As of early 2019, there are many doctors and lawmakers who take a “CBD only” approach to cannabis medicine.  CBD refers to cannabidiol, the ingredient in cannabis that has been linked to a myriad of health benefits and is also not psychoactive like it’s sister cannabinoid, THC (tetrahydrocannabinol).

While the current CBD renaissance is certainly a step in the right direction, it’s important that we continue to research and advocate for the medical application of the other cannabinoids found within cannabis because they, too, provide utility to ailing patients.

If it wasn’t for full plant medicine, Maddie would not be the peaceful and cheerful little girl that she is today. In fact, as Meagan continued to explain, it’s likely that the THC components of the cannabis plant that are most impactful for Maddie. THC has been linked to supporting the production of long-chain fatty acids, which is what her daughter needs and lacks as a result of her illness. For the sake of other patients suffering from conditions similar to Maddie’s, it is therefore important that we accept THC into the standard healthcare system and challenge the current “CBD-only” laws that exist within many US states.

Message to Parents of Medically Complex Children

Meagan wants to inspire other parents to play a very active role in their children’s healthcare and avoid feelings of shame when they voice their truth, even if this goes in the face of standard medicine.

Medical professionals often scoff at the fact that patients are navigating through the internet, self-diagnosing and “figuring out” how to heal themselves. Of course, this makes sense; most of us know someone who is obsessed with self-diagnosing based on what they read on WebMD, and this must make doctors crazy. However, when it comes to cannabis, Meagan highlights that even in 2019, there is a need for parents and guardians to take a more active role in finding solutions because doctors are not always open to recommending cannabis therapy.

In her speech, Meagan also reminded parents to consider that right now, healthcare is a business, designed around a capitalist market like other private industries. As a result, money and income streams often control what doctors know or don’t know. With this in mind, it’s imperative that parents advocating for medically complex children complete their own research on plant-medicine or cannabis solutions until standard medical education starts to incorporate these learnings.

So, when it comes to taking control of the healthcare plan for a medically complex child, Meagan laid out these tips:

  • Research and Share. If you think that cannabis can benefit your child, do the research yourself and provide the research to doctors.

  • Be Honest. Inform your doctor that you, as a parent, use cannabis. If more parents can say this outright to their doctors, then over time, this helps to reduce the stigma around cannabis usage and gets us closer to a place of acceptance and understanding.

  • Prove It. If you have seen the benefits to your child’s health through cannabis therapy, make sure that you are documenting proof of that improvement; this gives parents authority in the doctor’s office. For cannabis, a plant with so much stigma, images and video are power. In real-time, these tools can demonstrate the benefits of a plant that has historically been viewed through stigmatized, racist, and propagandist lenses.

  • Maintain Empathy. In all doctor discussions, ensure that you maintain empathy and come from a place of understanding. Oftentimes, it is the current medical system that has prevented the doctor from fully understanding cannabis, not the doctor themselves.

Meagan’s overarching message is that parents have power when it comes to their children's health. Although in our society we are accustomed to simply taking our sick child to the hospital and trusting what doctors tell us in return, when it comes to cannabis medicine, people need to be more proactive. Meagan reminded her audience that, “healthcare is not what it should be, and we deserve better.

A Mother’s Love Turned to Activism

Sometimes the strength of motherhood is greater than natural laws.
— Barbara Kingsolver

After Meagan’s speech, I scrawled the following in my notebook, Meagan deserves to be “Mom of the Year”. I don’t know who is in charge of handing out those awards, but I should certainly write to them.

Within the cannabis industry, a lot of people have specific personal ties to cannabis, and I often call this someone’s cannabis “why”. Meagan’s speech at CannaCon highlighted that for Meagan, her cannabis “why” is a love for her daughter and a desire to help others take control of their healthcare as well as the healthcare for their children. She continues to fight for policy reform to ensure that cannabis treatments can be administered in more public hospitals and schools. Meagan works to counter the stigma against cannabis in the healthcare sector not just for her family, but for future mothers, children, and families struggling to fight for care options that may not fit within standard medical boundaries.

As a fellow cannabis advocate, I am so proud of Meagan for supporting her child in the way that she has. Although she did not choose this path, she has made healthcare and cannabis advocacy her passion, and our system will be better for it. Now that her daughter’s health is stable, Meagan wants to make sure that access to cannabis therapy isn’t as difficult for others going through the same experience. She has traveled around Washington state in her journey to change policy and has spent considerable time in Olympia, appealing directly to state lawmakers. She has stood in front of crowds at Seattle CannaCon and Hempfest to share her message with others who may be looking for answers.

It seems nonsensical that in America, we have made it so difficult for people to traverse the healthcare system. Particularly when it comes to cannabis, there is a gap between the standard services that are offered and the most compassionate therapies available to us through plant and cannabis medicine. We need to close the gap to put the humanity back into heathcare and caregiving.

But, I have hope. People like Meagan Holt are out there creating noise and effectively driving change in the healthcare sector. But we must remember that changemakers cannot be successful in a vacuum; rather, if we are going to turn the tides on medical cannabis and truly reduce patient barriers, then more and more people need to become vocal cannabis advocates. We need to lift up changemaker’s messages in order to help drive their extraordinary cause.

And when it comes to cannabis, advocates must become the educators - to doctors, to our friends, to our community. In her CannaCon speech, Meagan outlined 4 things that all cannabis advocates must do in order to change perspectives and effectively advocate for cannabis therapy as healthcare.

  • Build relationships

  • Communicate clearly and calmly (keep your cool, maintain empathetic perspective)

  • Document and present your evidence

  • Don’t hide your truth

For those of us working to de-stigmatize cannabis medicine, let’s add these tools to our tool belt and continue to chip away at some of the negative preconceived notions that continue to surround this medicine.


How You Can Help

Support The Hand That Heals

Although cannabis has provided a lot of pain relief and elongated Maddie’s life, unfortunately, Maddie is not out of the woods. As of March 2019, Maddie’s doctors have informed the Holts that little Maddie is approaching liver failure and the Holts are in a position, again, to face the tragedy of sorting through Maddie’s end-of-life plans. Please consider providing them support in this time of need.

Screen Shot 2019-03-21 at 2.20.21 PM.png

To support Meagan, Chad, and Maddie, you can purchase a membership for Meagan and Chad’s blog, The Hand That Heals. Blog membership only $1.99 per month, or you can save with a yearly subscription for $19.99. On their blog, members can read more about Maddie’s story and gather real insights from a regular family that just happens to be a special needs family. The site also features a shop where you can merchandise that celebrates special-needs living as well as educate others who are not familiar with how to interact with special-needs individuals.

On The Hand That Heals website, one can also purchase Meagan’s recently published book, A Different Kind of Journey: Effectively Advocating For Your Medically Complex Child. In this book, Meagan includes first-hand insights about living with a special-needs child and navigating the healthcare challenges that are associated with this lifestyle. This book provides real-life advice for parents who are new to this reality or struggling to advocate for their own medically complex child.

Additionally, 10% of all proceeds generated from The Hand That Heals are donated directly to a 501(c)3 non-profit, Maddie's Hand. This organization is dedicated to making a difference in the lives of changemakers in the cannabis community.




Heather DagleyComment