Alithea Athans

This winter has been unusually cold here in the Northeast and because of this, I have been having a hard time staying warm. I keep my heat at 72 degrees as of late though it’s been as high as 75. The struggle to stay warm has a detrimental effect on my health, as I have cold agglutinin disease (CAD).

I do my absolute best to take precautions and even then, circumstances arise that prove to be challenging. As I look ahead to the warmer months my concerns will be the same. Even though it will be warm outside I still need to deal with air conditioning. The daily struggle is taxing, and I have begun to look at treatment options. 

As I investigate different options the one common denominator is cost. Unfortunately, treating rare diseases is costly, typically way above average. This is a difficult situation to be in. Obviously, the most important thing in the world is your health but the financial burden is astronomical, and the treatment options need serious consideration by my doctor of course but also by me.

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We all want to choose the best option with the most effective outcome. That’s why research is essential but even with research, the variables are still there, what benefits one patient may not have any effect on another. This is an issue that will affect me until a cure is developed. 

Read more about experimental therapies for CAD

As I have been looking into treatment, and know that there are more choices, there is hope. I had spoken to my doctor many times about how treatment would be covered. He feels that when it becomes a necessity that it will certainly be covered.

However, I have met many patients that thought the same thing only to be told that it wouldn’t be covered entirely or that their copays were far beyond what they could afford. This was disheartening, and this is what pushed me into digging deeper so I am prepared when the time comes.

The Assistance Fund (TAF) is one such charitable organization that offers help and insight. Now that a drug has officially been approved by the Food and Drug Administration (FDA) for CAD,  it can be covered under TAF. 

There is an application process and according to the TAF website: “TAF’s financial assistance disease programs help eligible individuals pay for their out-of-pocket medical costs for treatment, such as co-payments, health insurance, and incidental medical expenses.”

This is a huge relief. I had no idea that there was such an organization. However, there is no guarantee of approval and when the accepted applications fill up, you are put on a waitlist. The other factors to consider are reactions to treatment. When I was looking into the total cost, I realized that issues could arise that I didn’t financially plan for, such as severe reactions. All drugs have the potential to cause an adverse reaction and some of those are quite dangerous. It will be important for me to make sure that should a situation arise, it would be covered, or if nothing else I am prepared for that extra bill. 

I often wonder if an earlier diagnosis would have made a difference. I am not sure that it would but perhaps if general practitioners also considered rare diseases as possible reasons for certain symptoms, then maybe an early diagnosis would prevent waiting years to find out what is going on. Had I been informed and known what to expect then perhaps financial planning could have begun. As a matter of fact, my company offers health savings plans, and had I known I had a rare disease I would have taken advantage of that years ago.

I do feel that perhaps instead of having to deal with a larger financial burden at one time, maybe a diagnosis at a younger age would have helped me prepare for my future. 

Beyond what I wished could have happened, I must say I am still ecstatic to know that organizations exist that could potentially lessen the financial burden I may have to face. The number of advocacy groups that are out there for patients and their families is heartwarming. I had no idea that so many existed, as much as I need their support, they need ours as well. I am so thankful to have found them and I look forward to connecting with these organizations.