What more needs to be done for patient rights, protections, and access to cannabis in the United States? In this interview, Abbey Roudebush, Director of Government Affairs for Americans for Safe Access (ASA), explains the goals of ASA and provides an in-depth analysis of their annual State of the States report. She explains why medical cannabis access is a pertinent issue, the myriad obstacles patients still face in securing protections, and how to advocate for the rights of medical cannabis patients.
Can you tell us about your background and your role with Americans for Safe Access (ASA)?
Abbey Roudebush: At Americans for Safe Access, I am the Director of Government Affairs. I oversee our policy and advocacy in all 50 states as well as at the federal government level. It's our mission to provide safe, equitable legal access to medical cannabis for patients across the United States.
Prior to joining ASA in September 2021, I worked for almost four years at the Epilepsy Foundation, where I worked on a lot of access to care issues, including access to medical cannabis, in all 50 states and at the federal level. Before joining the Epilepsy Foundation, I worked at the state level in New York, where I was involved in passing the Compassionate Care Act.
I have about eight years of experience within cannabis policy and almost as many years in patient advocacy. I'm really enjoying my role at ASA, where I get to combine my passions for patient advocacy and cannabis policy to help ensure that patients across the country have access to treatment options.
What are ASA’s goals and plans for medical cannabis advocacy in the next few years?
Roudebush: We have a lot of really exciting plans. First and foremost, our goal for the past 20 years has been, and will continue to be, getting access to patients. Not only access to medical cannabis, but access to legal protections and other measures that will help patients.
We've seen a majority of the states across the country pass medical cannabis programs, but that's really just the start of medical cannabis advocacy. It's not the end. We’ve achieved one goal, but we are continuously working to improve these programs and to improve the legal protections such as housing and custody protections within these programs.
We are striving to improve things like affordability and the financial obligations that patients are required to meet. We're also trying to ensure that underserved areas have access to medical cannabis. One of our top priorities is to continue to pass these programs where they don't exist, while also improving programs across the United States.
At the federal level, we're looking to pass legislation that will protect patients and that will fix some of the federal laws that conflict with state laws. For example, the fact that cannabis is a Schedule I drug means that through the Drug Free School Zone Act, children and adolescents who use medical cannabis cannot access their treatment on school grounds. We’re also focusing on employment protections for federal employees who are medical cannabis patients and on housing protections, particularly for those who receive housing through the Department of Housing and Urban Development (HUD).
We’re also looking to set up some sort of national coordinating entity or government agency that will be able to help coordinate access to medical cannabis across the United States to set the basic requirements for what these programs must provide for patients. The states will then be able to go above and beyond that while still making sure that no matter where patients are in the country, they can rely on a minimum standard of care when it comes to cannabis.
In terms of research, we are working to improve policies to make it easier for researchers to work with cannabis and get data that the United States is sorely lacking.
Can you tell us more about how ASA has helped improve access to cannabis for research?
Roudebush: One of our top priorities at the federal level is to help remove some of the barriers for research, including removing cannabis from Schedule I to a different schedule to allow researchers to access it easier.
We’re also invested in helping to pass other policies such as the Feinstein/Grassley/Schatz bill (Cannabidiol and Marijuana Research Expansion Act) or the Blumenauer bill (Medical Marijuana Research Act) that can help researchers. Because one thing that I hear most from doctors, and also lawmakers, is that we need more data, but the data is extremely hard to get, so ASA is continuing to put priority on making medical research happen.
Right now, any cannabis policy on the federal level is slow moving, and so we're doing our best and hopefully something will pass soon to help alleviate those burdens for researchers.
ASA’s State of the States report for 2021 was released in February (1). What is the goal of this annual report?
Roudebush: The biggest goal is to give people a snapshot of what medical cannabis access looks like across the country. Every year, we give all 50 states and five territories a letter grade based on how well the medical cannabis program serves and protects patients in that state or territory.
This year, we revamped the whole report based on a lot of feedback from patients, legislators, and other advocates around the country. We looked at our report from previous years and thought that it no longer accurately reflected the patient experience, and so we re-evaluated and reassigned points. We added categories and included a penalties category. We graded all states and territories on 120 different metrics that range from patient rights, civil protections, and affordability to consumer protections and health and social equity so you can see which states have the best medical cannabis programs and which states have the worst. We also provide each state with recommendations on things that they can do to improve their program.
The report cards are the main feature of the report, but the report itself is a great resource for policymakers, advocates, and patients across the country to learn why all 120 metrics are important to patients. There are also legislation models or regulation language in there for policymakers and other recommendations on things that they can do to improve patient lives. So, each year the report is published to help educate lawmakers on where we are, how we've improved since last year, but also how we can we keep improving in the future.
How the report is unique compared to other assessments of medical cannabis programs?
Roudebush: We don't look at just one aspect of a medical cannabis program. I know that there are a lot of reports out there that look at equity within medical cannabis programs and we look at equity as well, but we really try to look at it from a 360° patient view. What are all of the things that a patient may experience or that may impact their ability to have access to cannabis? Every year we also release a patient survey to gather feedback from real patients about their state’s program and we incorporate that into our report as well.
How is the data for the report collected, organized, and analyzed?
Roudebush: That is a big question. It's done over many, many months. We start by looking at the previous year's rubric to see if there's anything that we want to tweak, to reassign points for, or if there are any categories that we want to add. We check to see if there were any oversights left out the year before or if there’s an emerging issue that is important now.
Then we finalize the rubric and assign the points. Once we do all that, we dive straight into research. We have a giant Excel document that has all 50 states and territories and on each of those is all 120 metrics. We start by researching, reading the law, reading the regulations, and trying to find the provisions in the laws and regulations that correspond with our rubric.
And then we assign points to it based on another written rubric. You can find it on our website: www.safeaccessnow.org/rubric . For all 120 categories, we explain why this metric is important and how we graded it. In our other spreadsheet, we assign a grade to it and then leave a note on that spreadsheet with the citation or the legislative regulatory language as our source.
Then once that's done, we go back through and see if there's anything that we missed or anything that has passed while we were doing our initial research. That's something that happened a couple of times this year. We would give a state one grade, but while we were grading, the legislature passed something or the governor signed something and we went back and changed the grade.
Since the report came out, have any states been surprised by their scores, especially considering the new grading rubric you implemented?
Roudebush: I'm not sure if any states have been surprised, but it seems like Colorado has been the most interested in their change of score. Just the change in grading alone lowered its score, but Colorado this year also passed a piece of legislation that is the single largest rollback of any state medical cannabis program that we've seen in the country. They lost a ton of points because of that rollback and as a result Colorado has been really interested in their new score considering the rubric and that legislation.
What most surprised or encouraged you about the results of the report?
Roudebush: I think what most surprised me was how the data we have on affordability matches exactly what patients tell us day in and day out. I have never doubted a patient who has told me that medical cannabis is expensive in their state and that they have trouble affording it because I know how much this can cost. I hear every day about affordability being a problem.
When we looked at policies that states can have to help patients with affordability, it's just crazy to me that it’s the lowest scoring category overall out of all of them. The highest scoring state in that category only received a 60%. I know the states hear every day about affordability being a problem, and yet they're not doing anything to help out with it. On the one hand, it was most surprising to me just because the scores in that category were so low. But on the other hand, it wasn't surprising because it just confirmed what our patient advocates are telling us. It is really hard to see that states are falling behind so far in that.
One other thing that has surprised me is the reactions we’re getting. Even though a lot of the grades for the states are lower than they have been in years past, we've been hearing a lot of positive things like, “I'm glad that you revamped the rubric because I think this grade is more accurate than last year's grade was.” That's made me feel great about our change in rubric. Our goal was to show what matters to patients. And what we're hearing from both policy makers and patients is that our new grading scale has achieved that and gives a more accurate insight into the program.
One thing that did encourage me about the report is that one of the highest categories overall is civil rights and patient protections. A lot of states are doing really well in providing for patients in that way. It's great that states are really working to legally protect patients because that was a big problem for a long time.
What would best help improve the affordability of medical cannabis? For example, do you think medical reimbursement will happen one day?
Roudebush: It is my dream that medical reimbursement will not only happen one day, but one day soon. I think that might be a little bit of a stretch—at least the “soon” part. But I do think eventually medical reimbursement will happen for medical cannabis patients, especially when insurance companies can look to the fact that if medical cannabis is treating someone, it's keeping them out of a hospital and it's keeping them out of emergency rooms. It could keep them from needing additional surgeries or other treatments.
Helping patients to afford medical cannabis now could help insurance costs in the long run. States can and should right now help to provide financial assistance, real substantial financial assistance, especially to low income, elderly veteran individuals to help them afford the product.
Additionally, a lot of states allowed telehealth visits during the initial lockdowns of COVID-19, but a lot of states have since let that lapse and no longer allow telehealth. So, then patients also have the hurdle of actually traveling to a doctor to get that recommendation when it's something that they could easily do 15 minutes on their computer from home. And if you go to a doctor specifically for a cannabis recommendation, some insurance will not cover that visit.
Another important thing states can do is do away with their registration fees. It can be a big hurdle for patients to have to pay to even be able to access cannabis in the first place. That's especially true in states that have passed recreational adult use laws.
There's no need for patients to be paying for the same access that adults have. For example, Oregon charges patients $200 every year to register for their medical cannabis program, but because they also have recreational adult use, any adult in the state can walk into a dispensary for free. It's not the same to say, “Well, don't pay the $200, just go to a recreational dispensary,” because by being a registered medical cannabis patient, patients receive extra legal protections and other things that don't exist in the recreational market. Patients need the protections of the medical cannabis program, especially when Oregon is making hand over fist revenue on the recreational cannabis side. There's just no reason for them to also have the highest registration fee for patients in the country.
Have you seen an increased need for patient advocacy in states that have medical programs but have also legalized cannabis for adult use? Are you seeing less focus on medical protections in those states?
Roudebush: Absolutely. One trap that a lot of states seem to fall into is thinking that passing recreational adult use cannabis replaces the medical cannabis program; that there's no need for medical cannabis if a state legalizes recreational adult use, but that is not the case.
A recreational adult use law can and should, in my opinion, coexist with a medical cannabis program. But they should remain separate because there are protections and other measures in medical cannabis programs that protect patients that are not present in recreational programs.
Furthermore, recreational adult use is only for individuals 21 and older. There are many children, adolescents, and young adults who do use medical cannabis. So, when states put all their regulatory effort in recreational adult use and let the medical cannabis program fizzle out, they're doing a big disservice to a lot of patients in the country. They're also adding another financial burden to patients because if they go through the recreational retailers, they have to pay the sales tax and the excise tax, which can be a huge amount that they wouldn’t have to pay in medical dispensaries.
Can you give us some examples of places where or how medical cannabis programs are growing?
Roudebush: This year in our State of the States report, every state—except four—and territory that has a medical cannabis program all grew. The vast majority of them are growing. These programs are still valuable, and the rights and protections afforded in the program are still necessary for patients. So, it's nice to see that all over the country, these programs are growing. In a lot of states, they are just growing naturally.
Other states passed additional legislation in the past year or so that expanded the qualifying condition list. We encourage states to continue expanding the qualifying condition list, to reevaluate their policies, and to look at the hurdles that patients have to jump over in order to register for this program to help facilitate this growth.
You noted the need for a national coordination agency for patient rights and protections. Can you tell us what that would look like and why it's so important to set up?
Roudebush: This would be a national coordinating agency or a sub agency, probably under the Department of Health and Human Services (HHS).
I could ask five people what agency they think of for cannabis enforcement, and they could each say a different agency and still all be right. You could say Food and Drug Administration (FDA) because the FDA has jurisdiction over dietary supplements and pharmaceuticals. You could say Department of Justice (DOJ) because of cannabis prosecution. The Drug Enforcement Administration (DEA) is the one responsible for awarding the Schedule I research grants for researchers and does some cannabis enforcement too. The point is that each agency has a little piece of the pie. The agencies aren't the best at communicating with each other, so there's a lot of finger-pointing and delaying when you need to do anything with cannabis.
First and foremost, this national coordinating agency, an Office of Medical Cannabis Control or something of that sort, would take all those cannabis responsibilities from the other agencies and house them in one department and the people who work there would be the governmental experts on cannabis policy. It would not be an oversight agency for medical cannabis programs, but one that helps states coordinate nationally. This can include things like allowing interstate commerce and allowing products to travel from one state to the other to help fill dispensaries and ensure that patients have access.
It would also help states talk to each other about programs and best practices and set the ground-level of patient rights for medical cannabis programs. If you're going to have a valid medical cannabis program, you need to at least do these things.
That's important right now, especially when you look at the State of the States report. There are no two states or territories in that report that have the same exact grade, because each state is trying to build their own program independently. They're doing things their own way, which does work for the state, but it doesn't work for patients. For example, if patients need to travel to another state, they need to worry about figuring out another state's law. They need to figure out if they can even access their medicine legally in another state, whereas a patient on regular pharmaceuticals doesn't have to consider that.
A national coordinating entity will help relieve some of that from patients by helping the states coordinate and standardize programs across the country to ensure that a patient living in California has the same access and opportunity as a patient living in Nebraska.
Have you seen organizations like this or agencies in other countries where it is fully legal such as Canada or Israel?
Roudebush: Yes. Actually, I think there are 45 other countries that have some sort of office of medical cannabis agency that is responsible for coordination of the program. I believe Germany has one. I think Canada might as well. It’s not some random idea. It is based on what we have learned from other countries that are frankly surpassing us in medical cannabis access and research because their governments have been willing to acknowledge a fact that our federal government has been unwilling to acknowledge.
Do you think it would take federal legalization to have an agency like this formed in the US?
Roudebush: No, it shouldn't, and Congress should not look at it that way. The fact of the matter is that 36 states have some sort of medical cannabis program. It's way past time for the federal government to stop pretending like those programs don't exist just because cannabis is Schedule I on the federal level.
It's been 25 years since California implemented its medical cannabis program, and since then, other states have followed suit. Some states, including California, have even legalized it. Medical cannabis is here and it's here to stay, and it is past time for the federal government to step in and help patients. Legalizing cannabis on the federal level is not required for them to acknowledge that patients have been using medical cannabis for 25 years.
How can people learn more about the laws surrounding medical cannabis?
Roudebush: Being from ASA, of course, I'm going to mention our organization. I think the State of the States report is a great way to give you a snapshot of the laws across the country. You can look at each state individually as a grade, but then you can also look at the rubric and see why we decided to give that grade, why we decided to look at arrest protections, or why we decided to look at custody protections, and why that matters for patients. You can find the report and rubric at www.safeaccessnow.org/sos. Generally, if you have any questions about traveling with medical cannabis or employment questions with medical cannabis, the ASA website is a great resource for that as well.
If you're looking for specific information for your state, I do recommend checking out the state regulatory agency for medical cannabis. They often have a lot of patient resources, and if there's an answer that you can't find, then usually there is contact information as well. If there's ever any information that anyone's looking for and can't find, they can always email firstname.lastname@example.org and we will help if we can.
What are the best ways for someone to get involved in advocating for full patient rights in their state or even at the federal level?
Roudebush: One of the best ways to get involved would be to join your local ASA chapter to become an ASA member. We have an advocacy network of over 100,000 advocates and we send alerts based on things happening in your state that allow you to go through our portal and send letters or contact your state or federal legislators to make your voice heard.
We also have an annual conference and a hill day called the Unity Conference (2), where people can talk to their legislators. Another thing I recommend that people can do on their own is to pay attention to the legislature to see what cannabis bills they are looking at. You can reach out to your legislator at any time, even if they are not considering a cannabis bill at that moment. You can let them know how important the medical cannabis program is to you and what improvements you would like to see. It's never too early to start working with your legislators on improving the medical cannabis program. We have resources on the ASA website about how to do those things yourself.
Finally, most important for any advocate—and I can't stress this enough—is telling your story. If you are willing to be an advocate and you're willing to share your story with legislators and regulators in your state, that does far more to influence policy makers than I could ever do. Patients are the most important advocate that we have, and sharing firsthand experience is why medical cannabis programs pass and why they are continually improved. So even though your state may have a medical cannabis program, there are always things that can be improved.
It's important that your legislatures remember that there are real medical cannabis patients in the state. If they do start considering recreational adult use cannabis, it’s important for them to remember that that is not a substitute for medical cannabis program.
How are ASA and medical cannabis patients in communication with each other? Is it individually through emails and phone calls or do groups of patients come together and share their views?
Roudebush: All of the above. Individual patients do reach out with problems or questions, and we help them as best we can. A lot of communication happens through our mailing list. I encourage everyone to sign up for the ASA mailing list and also sign up to become an ASA member because you will receive a lot of information that way. This is one of the ways we send out our patient survey every year to get individual feedback on their state's medical cannabis program. Advocates can stay up to date with things going on in their state through the mailing list. As I mentioned earlier, if there's ever an opportunity to send a letter to their legislature, either state or federal, we will email them.
For ASA members, we also have additional opportunities such as webinars, Zoom meetings, and roundtables with me to have a group conversation about the state of medical cannabis across the country.
Connecting with us on social media is another great way to get involved and to stay involved and to see other advocacy opportunities that are out there. We're on Facebook, Twitter, LinkedIn, and Instagram. Connecting with us through social media is a great way to keep in touch with what we're doing day to day.
To read the full State of the States report, see how your state scored, or get involved visit: https://www.safeaccessnow.org/