Step therapy is a cost-saving measure where insurance companies make patients try cheaper drugs before covering more expensive ones prescribed by their doctors – sometimes it is referred to as the “fail first” approach as patients must “fail” the cheaper medications and treatments before getting to the more expensive ones.

The Safe Step Act really matters to me because of my own experience. When I got diagnosed with my rare disease, the research and my doctors clearly pointed to one treatment that was the most effective and had the fewest side effects, both short and long term. Which was great! But because of step therapy, I was going to be denied that treatment and forced to try other treatments that were not only more harmful and had more serious risks and side effects but according to the research and top specialists, was actually less effective.

Due to the implementation of step therapy, I faced the prospect of being denied the treatment that the doctors and the research indicated was the right thing to do and instead would be subjected to various other treatments such as steroids and chemotherapy, that were significantly more harmful, until we reached the point where they would all fail – at which point I would then be allowed to try the prescribed treatment. 

Against their better medical judgment, my doctors did not even want to prescribe IVIG, the indicated treatment for my condition because they knew that I would be denied due to step therapy and that the process and stress of trying to get my treatments approved OR getting it, having it work and then having taken away – would cause stress, depression, anxiety and make everything worse.

After many long talks, I got my doctors on board enough to just try and send it in. Knowing it would be rejected and I would have to appeal and argue all my points and that this process could take years – I actually spent weeks writing a massive 70-page paper filled with copious amounts of research and citations, test results, proof of every diagnosis, letters from all my doctors and top specialists on my condition, pages upon pages of me arguing and providing facts against every anticipated point I knew they would try to use to say no and a personal letter from me basically begging for my life.

After a lot of hard work, prayers, tears, and insurance calls – it worked for me and I was able to finally get access to the proper treatment without having to go through years of treatments that wouldn’t work, would diminish my quality of life, and cause my condition to progress.

It is still something I have to go up against every 6 months and fight to prove to my insurance why I need to stay on the infusion medication I am on rather than having to get off it to “fail” the other treatments before getting back on what is working. Every 6 months, my life hangs back in the balance and in the hands of random people at the insurance company who know nothing of my condition and when it is time for me to switch insurances – I will lose access to my treatment and have to fight for approval all over again and hope they will approve it.

In this story – I got lucky. This is not common at all. I have seen people fight the same battle, with the same disease, with thousands of signatures on petitions, letters from doctors, even a letter from the senator of their state – and still get denied.

This is not right.

I believe that no one should have to go through this to get to the right treatment they need. That’s why I’m an advocate for getting the Safe Step Act passed.

Getting this passed will not ban step therapy  (though that is something I believe needs to be in the pipeline) getting it passed will allow patients to be granted an exception of going through step therapy or “failing first” if the patient has already tried the required treatment and it was discontinued due to lack of efficacy, if treatments are expected to be ineffective, if treatments are contraindicated or will likely cause an adverse reaction or harm to the patient if the treatment has or will prevent the patient from fulfilling their responsibilities at work or performing daily living activities, or if the patient is stable with their current treatment that was covered by their previous insurance plan.

On a personal note, getting this passed is something that will make a massive difference in my life now and especially moving forward. More importantly to me though is that – I got lucky. I am privileged to have the insurance I have and the education, safety, access, resources, support and more to fight for what I needed. That is not something many people have when they are in these situations. They don’t have the time to fight – so they don’t and they get put through fail first while they and their condition worsen on every level, just so insurance can save money. 

This is wrong and we need to fix it. Though this will not fix the issue that is “step therapy” it will help the subset of patients who are suffering from it the most. 

I would love your support in getting the Safe Step Act passed! I know I can speak for all of us being held hostage and having our lives dictated by step therapy – thank you for any support you can give. It means the world to us.

I know how trying to advocate to get a piece of legislation passed on a federal level can seem too big or like doing something as simple as calling your representative won’t make a difference. I felt that way too – but when I was in a position where my life depended on getting legislation passed – I had to believe that advocacy could make a difference. 

And it did. 

It takes time and effort, but it can and does. 

Where do you start though? In regards to trying to get the Safe Step Act passed there are a few different things you can do:

1. You can call your local representatives and let them know you, as their constituent, would like them to support the Safe Step Act. 

2. You can email your representatives letting them know you would like them to support the Safe Step Act. 

3. You can set up a meeting with your representatives to talk about how you would like them to help support and work to get the Safe Step Act passed. This is the one I recommend most as it is personal and allows you to develop a relationship of communication, collaboration, and accountability.

4. You can share about the Safe Step Act on social media, with your friends, family etc. and encourage them to contact their representatives so that more people aware and advocating. 

These are just a few of the ways you can help to support getting the Safe Step Act passed! I hope you will join us in our efforts to get this legislation passed and make a difference in so many people’s lives!