What the hell is CVID and IVIG Infusions? Find out here

This is what goes into one year of IVIG infusion therapy? 

Over the last year, Gavin and I have been saving up all the empty GAMMAGARD vials used for each infusion. We wanted to be able to show you how much goes into managing this serious and sometimes life-threatening disorder.

We’ve tallied up everything that has been needed to make it through the last year of treatment, and it goes as follows:

  • 314 vials of GAMMAGARD
  • 192 injections, not counting any re-sticks needed
  • 96 syringes were used to draw up and infuse the medication
  • 192 subcutaneous needles
  • 192 sets of tubing
  • 96 alcohol preps
  • 96 eighteen gauge needles
  • 2 extra large Sharp’s containers
  • 96 total infusions
  • 3 or 4 trips out of town to see his immunologist
  • Roughly $274.73 per week
  • Roughly $13,187.04 per year

I’ve also researched the cost of this treatment over the last year. Gavin’s on disability, and we are blessed because everything has been covered. The cost listed above is what Medicaid has paid, however, the actual cost is significantly higher. Without insurance, these treatments could cost roughly $26,000 a year. This number may vary depending on actual treatment needs.

Keep in mind, that I performed these infusions myself. Therefore there wasn’t the additional cost of medical staff, visiting nurse or hospital stay. The cost with that included, both with and without insurance would be astronomically higher.

Gavin will need these infusions for the rest of his life. This will never get better, and will likely continue to get worse over time, requiring additional infusions per week.

We’ve been holding steady over the last year and for that, I’m incredibly grateful.

I’m hoping that this article helps to raise awareness for people with disorders like Common Variable Immunodeficiency. I wanted to show you what Gavin endures over the course of a calendar year, and hopefully, provide insight into all that goes into managing this kind of disorder.

Gavin hopes that anyone going through something similar, will read his story and know they aren’t alone.

A side note, that may or may not be relevant by the time you read this.

At this moment in time, the Republicans are currently trying to repeal and replace the ACA or Affordable Care Act. What they have presented the American people as a potential replacement is considered an absolute disaster by all major experts and medical organizations in the field. 

If this bill passes in its current or even similar form, millions of people will lose their insurance coverage. No one can tell me for sure, whether or not Gavin will be impacted by this new bill, should it pass. 

I pray that whatever ends up happening, doesn’t negatively impact the lives of those most in need. People like Gavin need IVIG therapy covered in order to survive. 

There are a great many things to worry about if this bill passes, and until we know anything for sure, people like Gavin and millions of others will be living with great uncertainty as to what the future holds for them. 

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Rob Gorski

Does anyone else have a major comorbid diagnosis that goes along with Autism for any of your kids?

Rob Gorski

Does anyone else have a major comorbid diagnosis that goes along with Autism for any of your kids?

Would love your thoughts, please comment.x
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