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The Adventure of Getting the Care You Need

Severe asthma treatment can be absolutely frustrating at times. Recently, I have needed to make an adjustment in my treatment, as my current regiment was not cutting it. The challenge was that the medication I had success with in a clinical trial was not yet available in Canada.

I needed to find a new treatment plan

This began a year-long process of trying to figure out processes around extension studies, compassionate use, government regulations, and a string of heartbreak. This mostly had to do with being at the literal mercy of the pharmaceutical company.  It is a very strange feeling of not having any control over a situation or being an active player.

Let me preface this by saying that there are programs in place to help patients get the medications that they need. It is essential that you work with your care team to ensure that you are working together and managing expectations. There are no guarantees with special access programs, and there are considerable paperwork and criteria that need to be met. It is important to note that the process could be ever-evolving and you should pack your patience.

Where do I begin finding a new treatment plan for asthma?

This needs to start with confirmation from your physician that this course of treatment is in your best interest. There may be alternate treatment plans that may be available or alternate medications. To get anything moving, it is likely that your physician will need to initiate any requests on your behalf.

Know the process

A request for special access/compassionate access or similar patient programs is just that, a request. There is not a guarantee that a medication will be provided or provided at no cost. I highly recommend that you learn all you can about the process. Unfortunately, a majority of the communications will be between the pharmaceutical company, government health agencies, and the physician.

In my circumstance, most communications were coming through the physician. The challenge can be when there is a communication breakdown between the pharmaceutical company and the physician, this can lead to a very frustrating communication void. The best thing you can do is to keep track of all the information that is requested and submitted and approximate follow-up dates when you may receive further information or approval.

Stay up to date on new developments

Keep on top of this information. Sometimes it can take some time to get further information, or you may be lost in the shuffle. Ensure that you get all the contact names and information that are available to you, including the department and if your file is being transferred for review. This will make it much easier to follow up on information or questions.

Consider outside factors

There may be outside factors that you can not control, such as a drug being close to approval, receiving negative public payer review, other safety data becoming available, and even receiving unfavorable reviews from different payers’ systems. These factors may affect when a pharmaceutical applies for regulatory approval and can affect other decisions, including special access and compassionate use.

Have you had to find a new treatment plan before? What did you do? Tell me in the comments below!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Asthma.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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