Donate
Blog

SPPAN Tracking State Issues- How Can We Help CRPS/RSD?

Published on April 18, 2017 under Call to Action

This blog was originally titled “How SPPAN Went From Tracking A Few State Issues A Year, To Monitoring 1,900- And Changing the Rules in Several States.” It was initially posted on Connectivity. You can click here to find it in its original form.

At RSDSA’s Nashville conference, pain-related legislation was a major hot topic. Some of the most frequently asked questions were about pain legislation and how to move towards change. RSDSA was offered this blog by CQ Roll Call to help explain a little bit of what SPPAN does and how one person can make a difference. How can this help people with CRPS/RSD? How can we move towards progress? The article starts below:

SPPAN is focusing on 1400 bills and 500 regulations that affect the chronic pain community, including people with CRPS/RSD “Here’s how one organization (for whom policymaking is currently on fire in the states) moved from managing a handful of pieces of legislation at state level four years ago, to keeping on top of 1,400 different bills and 500 regulations, in all 50 states, D.C. and Puerto Rico. Without missing anything of importance.

And it’s all done by ONE policy director.

Katie Duensing is the assistant director for legislative and regulatory affairs at the Academy of Integrative Pain Management. Like many busy policy directors, a huge part of her job is juggling federal and state tracking for which she has CQ’s StateTrack to see what’s going on with her issue. But four years ago pain management, and patient access to it, wasn’t yet treated as a legislative and regulatory issue of top priority in the states. Then came awareness of the opioid crisis. Suddenly states all across the country were being confronted with huge spikes in prescription pain medication addictions and overdoses. Lawmakers needed to legislate fast regarding the prescribing and dispensing of opioid analgesic medications. But that led to a lot of knee jerk policy being written.

Need to watch what’s happening in the statehouses? Check out StateTrack

Enter the State Pain Policy Advocacy Network (SPPAN), set up just five short years ago as the policy department of the Academy of Integrative Pain Management, to tackle the policy barriers relating to optimal pain management.

A screenshot of SPPAN's main page. How can they help us make changes in CRPS/RSD legislation

 

The Academy of Integrative Pain Management has nearly 4,000 members that represent the various members of a “pain care team” necessary to provide effective integrative or multidisciplinary care. Half their members are physicians, but other disciplines include nurses, behavioral health specialists, physical therapists, pharmacists, acupuncturists, physician assistants, chiropractors, massage therapists, and more.

The Recent Shift in Action

‘I’ve been doing this for four years, and the first year it was just a handful of states dealing with pain management regulations and opioid prescribing,’ says Duensing. ‘Now it’s really every state on some level. It’s a constant deluge. There used to be a break in the summer, when the legislatures were out of session, but now that’s when the regulations start coming fast and furious, and the pain management rules are written.’

The Dilemma

The sheer numbers Duensing has to stay on top of are staggering: ‘I track all legislation and regulation related to pain management in all 50 states and in D.C., as well as federally. It’s intense to say the least. We don’t work on all of them in-depth, but we still track each one, and I go through them all to decide if it’s relevant or not. If it is, I categorize it in case we need to look it up quickly. We track by issue and by jurisdiction, and there are 13 different issue trackers we’re watching with StateTrack.’

 

SPPAN focuses on pain policy issues t;hat may affect all people with chronic pain, including CRPS/RSD

How SPPAN Has Translated That Tracking Into Big Wins

In Florida last year the Board of Pharmacy was looking at redoing their dispensing guidelines for controlled substances in response to a big patient access issue. A couple of years previously, there had been a significant push in the state to shut down what are referred to as “pill mills”, the so-called clinics where patients could get prescriptions for large numbers of opioid analgesics without getting a proper evaluation. While the clinics were forcefully shuttered in Florida, the unintended consequence was that the scales tipped too far in the other direction, says Duensing. ‘Even patients that were getting legitimate prescriptions from legitimate practitioners, couldn’t get them filled. Pharmacists were so terrified of the backlash from all of the rules, and from the fear of the DEA looking at them very carefully, that they essentially said, ‘we’re not going to fill these prescriptions.’ So all these patients couldn’t get their medications. Even the media reported on it, which was a testament to the efforts of a coalition of patients and providers in the state highlighting these terrible disparities.’ Duensing picked up on the Florida prescribing-issue using StateTrack, and used it to get updates as the rules were amended. ‘The rules were published in proposed form three different times, so it was quite the process. But we were able to keep up to date, keep tracking the changes, keep putting in our comments and pulling together the necessary stakeholders,’ she says.

The states are a whopping 17 times more productive than Congress. How are you staying on top of state legislation? Check out StateTrack!

‘We wrote numerous letters to the Board of Pharmacy and had suggestions on how they could deal with the issue. But we also attended hearings and convened many interested stakeholders to really discuss the issues. We spoke with the DEA at length, the Florida Attorney General’s office, and really tried to work the issue from within. Florida can be a difficult state to crack if you’re not on the ground.’

The Result

Have your medications been affected by changes in policy. SPPAN has been keeping track

For SPPAN and their stakeholders, their constant tracking and commenting meant the resolution was a clear win as they effectively ended up completely rewriting the Board of Pharmacy rules. ‘The new rules really enabled pharmacists to practice the way they wanted and should be practicing, to give patients their medications. That was a really huge win in Florida, with a lot of stakeholders who worked closely together. Luckily everyone saw that there was a problem and that doesn’t always happen,’ says Duensing. The icing on the cake came when Florida’s attorney general, known to be tough on crime, and who had been behind the push to get the pill mills shut down, came out and said the pendulum had swung too far in the opposite direction, and the issue of patient access needed to be addressed.

Spotting The Trend In Delaware

Thanks to those almost 2,000 pieces of legislation and regulations Duensing is keeping an eye on, she was also able to spot bothersome regulations in Delaware. In August 2015, the Delaware Control Substance Advisory Committee released the first draft of their rules related to safe prescribing of opioid analgesics. Duensing saw that bubble up from her StateTrack alerts. ‘The first draft was worrisome for us, and we submitted seven pages of comments in response, proposing alternate language and explaining why some language might not be correct,’ she says. While the final proposed regulation is expected any day now, SPPAN can mark things down as another solid win. ‘They ended up adopting a good amount of what we suggested verbatim, which was really very exciting,’ says Duensing. ‘I found this originally using StateTrack, tracked it all the way along, and have been alerted to each new proposed version. StateTrack has been very reliable through the whole proposed regulation, and we’re anxiously awaiting the final version any day now!’

How Having a Tool Makes Life Easier

Having a tool that tracks diligently state by state, means Duensing and her small team can stay on top of the multiple pieces of legislation that have spiraled relating to pain management throughout the states. ‘Because we’re a national organization, and the fact our field covers legislation and regulations that are both federally and state controlled, it would be almost impossible to do this without a tracking tool like CQ StateTrack. I certainly wouldn’t get the coverage or depth needed. Or the timeliness.’

Want to find different pain policies that may affect you. Check it out state by state on SPPAN's website

 

Legislative Tracking – The Quiet Man On The Team

‘We used to be a three-person department, but the director of policy and advocacy became the executive director of the organization, so we like to call ourselves a two and one third department now,’ says Duensing. ‘I know some people that track manually, but they usually only target a few states, or for a very narrow issue. When I tell people how much I’m tracking, they’re blown away. The sheer amount is ridiculous.’ ‘I still track a lot more than what our top priorities are, because we do deal with other issues,’ Duensing says. ‘If I see a hearing has been scheduled for a bill having to do with pain rules, or a piece of legislation having to do with a prescription monitoring program, I’ll do a deeper analysis to see if it’s something we need to support or oppose. If so, I start writing letters.’

Advocacy With A Twist

People with CRPS must advocate for themselves- for the sake of doctors, medicine, and other policies as listed by SPPANThose letters sometimes take the form of giving the perspective of pain physicians, and show unintended consequences for patients, and how they might be resolved. ‘Other times we’ll reach out to our stakeholders and try to do sign-on letters. If you can get 70 organizations to sign onto a letter, you’re going to get much further. The way we depend on action getting done is by finding and disseminating legislative and regulatory updates to the SPPAN network organizations, and reaching the leaders of these organizations.’ SPPAN has a long list of network organizations, such as the Center for Lawful Access and Abuse Deterrence, the American Medical Association and American Cancer Society – bodies concerned, but not necessarily directly involved with pain management. ‘We try to be both a warehouse and a distributor of pain policy information, keeping stakeholders up to date on the most important issues that need action,’ she says. ‘In my opinion the most important aspect of my job is the letters I send out to policy makers because for us that’s where the rubber meets the road, and how they hear from us. A hugely important part of my and my colleagues’ jobs, jointly, is outreach to other organizations, because that’s also how things get done, too.’ While Duensing’s organization has been at the eye of a hurricane of policymaking for the past few years, it’s not showing any signs of letting up. ‘When I first started, our field was such a kind of niche one off to the side. No one really talked about it and getting any media attention was next to impossible. But in just a few short years, policies related to pain care have quadrupled! It’s a really intense time. I can’t even imagine not having a tool like StateTrack. It’s really vital to what I do.'”

 

CRPS/RSD warriors, be sure to find SPPAN online and follow their efforts. See how you can help make a difference for people living with chronic pain syndromes, such as CRPS/RSD. It is important to get involved!

Tagged: , , , , , , , , ,