Decisions, Decisions, Decisions

The time was quickly approaching, I was coming to the end of my clinical study and the many questions of what is next were coming to a forefront. These times always make me a bit nervous. In most of the studies I have participated in, the drugs have not be approved and available on the market or to transition to. This is the first study that I will have actually have a viable (yet very expensive option) to have after the study ends. The cost will certainly be a factor as well as what insurance will cover or what patient assistance programs may be available. I won’t be able to make those decisions until I have determined what my next treatment steps will be.

End of a clinical trial for an asthma patient is a time of decisions

In a couple of weeks, I will prepare to have an EOT (End of Treatment) appointment in which I will be discussing this very topic. It will be interesting to compare the drug studies that I have previously participated in and determine with my respirologist which will be the best option for me. When this topic comes up, I always go back to what were my goals for participating in the study in the first place? My top priority is to not be prednisone dependent and the drug that can get me there, without other significant side effects may be the winner. I have learned from previous studies that while dumping prednisone is incredibly awesome it doesn’t always mean that you will have improvement in your lung function or quality of life. Ideally, I want it all. I have not yet found the perfect combination. In an ideal world, there are thoughts that I could benefit from a dual biologic combination. It is my understanding that it is not a combination that the FDA or pharmaceutical companies approved. I am hoping that we may be able to move towards a combination that will at least get me close in the near future.

Assessing the benefits of a treatment for the patient

The last time I had this meeting, there was a long conversation about what the benefits that I received from the study drug were and where some challenges were. Finding the perfect treatment combination is all about balance, I did not have other options and this time I will have a menu of options. This is a testament meant to the new treatments that are available on the market that are targeted towards severe asthma and in particular asthma with an eosinophilic component. Interestingly, I have tried 2 of 3 that are thus far so I will have real data for comparison. I will not be able to start a new treatment of a biologic until I have been through the washout phase which is approximately 90 days. I have to admit that I am feeling hopeful this time, having option means that I will only need to plan for a short window where I may become symptomatic and honestly, I don’t know if it is a guarantee that I will have an increase in symptoms.

In the interim, I am getting ready for the appointment by mapping out what my goals are, what my barriers are (cost, complex insurance approval, inconvenient dosing (IV dosing requires more planning and commitment), what the overall benefits are. There is another drug that I can try that I do not have experience with and I would need to be willing to commit to the unknown. I am looking forward to the discussion with my doctor and hopefully will have a new plan to report back on.

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