GROWING UP WITH CGD

EVAN:
Since I was young, my parents have been always been trying to tell me and remind me about CGD.
They have been extremely vigilant, very active with helping me and caring for me.

KEITH:
We started giving Evan the ACTIMMUNE injections when he was very young, around 2 years old.
But I think the most important thing is just to listen to your child.
And Evan would tell us, you know, when he we started, he did not want to watch.
He wanted a countdown.
We did it and we were done.
When he got a little older, he had to watch it.
He couldn't do it unless he was watching and until he was ready and he would tell us, OK, it's time.

EVAN:
When I was younger, my dad would tell me to help me understand that I always love to build and create.
So he would tell me the instructions for these building sets.
He would tell me that in my body, in my instructions, I'm missing 1 certain step. And the medicines that I'm taking add in that step to complete the set.

THERESA:
I pictured Evan eventually giving him the shot himself.
Knew he could do it.
Thought it was going to take many, many steps and and that's OK.
But eventually he would get there.
I was really excited for him to go ahead and and start.
You can do it.
I know you can.

EVAN
As soon as I was into my teenage years, I was like, OK, well, why do I have to take this medicine?
Like I'm not sick?
And all these doctors were telling me, oh, you're doing so good.
Keep it up.
I didn't realize that these medicines were the ones that were actually keeping me healthy.
And once my dad started transferring over to me, telling me, OK, now you have to remember.
You have to do your medicine or you have to come get me to help you with the shot. He told me I I am need to be on top of this. But I would.
I'd be like, oh, I could I could miss one.
I can miss.
I can miss some.
I could Oh, I just forgot.
That's OK.
I forgot.
And then that led to me probably like 2019 or 2020.
I don't remember when exactly, but I got so sick.
It was building inside of me, this abscess in my liver.
But it created just a whole, like, whole bunch of gunk in there because I wasn't taking my medicine like I should be.
And it actually sent me to the hospital for around like two or three weeks.
And from there, the whole recovery process was months and months.
And only after that did I realize, like, OK, maybe my parents were right.
Maybe, maybe this medicine stuff is really, I need this.
Like this is important.

OUR EXPERIENCE WITH ACTIMMUNE

THERESA
It all starts with learning at a young age instead of just, you know, always having the parent do it, introducing, you know what it is, how to do it, why you're taking it. But talking about all the aspects of it, the process, the ordering, what goes into it, I think those are all important pieces to eventually administering it yourself.

KEITH
When he was ready to do it on his own, we we knew, you know, he's going off to college, he's going to have to figure this out.
And so he started with getting the injection ready with the cap on the needle.
He touched his leg and he did that, you know, once or twice and then the next time with the cap off, he touched the needle to his leg.
And that's, you know, that's not easy to do.

EVAN
He would take out fruit that was old or expired and he would have me fill up the vial of the injection with water and then just give the fruit and have the action of giving a shot to something until I was ready for actually taking the ACTIMMUNE and giving it to myself.

KEITH
I'm exaggerating, but I think it took 1/2 an hour.
When he was done, he looked up at me and he said Dad, you're fired.
And he's been doing his injections ever since.

ADVICE FOR CAREGIVERS

KEITH
Letting go is very hard for parents for well, it was hard for me.
But it's it's necessary and it it takes years. Advice I would have for parents about when it's the right time for your child to take over their responsibility for their medication.
They're going to do it at some point. It's it's not a either or.
So it's a matter of finding the time when that's right for you and for your child of when you need to stop and let them have responsibility and responsibility.
They will take great pride in that.
And I think Evan realized he took great ownership when it was his responsibility.
He wasn't doing it for us anymore.
He was doing it for himself.

EVAN
For any parents I would just say as long as your kid is showing that they could, they could be responsible for it.
I think that you should trust them because once my parents showed me that they could trust me to do my medicine,
especially my shots and my pills, it got so much easier to do everything, 'cause I didn't feel like I was being forced.
I was in the position where I understood and I knew that this was under my control, approved uses and important safety information.

IMPORTANT SAFETY INFORMATION

What is ACTIMMUNE® (Interferon gamma 1-b) used for?

ACTIMMUNE is part of a drug regimen used to treat Chronic Granulomatous Disease, or CGD. CGD is a genetic disorder, usually diagnosed in childhood, that affects some cells of the immune system and the body’s ability to fight infections effectively. CGD is often treated (though not cured) with antibiotics, antifungals, and ACTIMMUNE.

ACTIMMUNE is also used to slow the worsening of severe, malignant osteopetrosis (SMO). SMO is a genetic disorder that affects normal bone formation and is usually diagnosed in the first few months after birth.

When should I not take ACTIMMUNE?

Don’t use ACTIMMUNE if you are allergic to interferon-gamma, E coli-derived products, or any ingredients contained in the product.

What warnings should I know about ACTIMMUNE?

At high doses, ACTIMMUNE can cause (flu-like) symptoms, which may worsen some pre-existing heart conditions.

ACTIMMUNE may cause decreased mental status, walking disturbances, and dizziness, particularly at very high doses. These symptoms are usually reversible within a few days upon dose reduction or discontinuation of therapy.

Bone marrow function may be suppressed with ACTIMMUNE, and decreased production of cells important to the body may occur. This effect, which can be severe, is usually reversible when the drug is discontinued or the dose is reduced.

Taking ACTIMMUNE may cause reversible changes to your liver function, particularly in patients less than 1 year old. Your doctor should monitor your liver function every 3 months, and monthly in children under 1 year.

In rare cases, ACTIMMUNE can cause severe allergic reactions and/or rash. If you experience a serious reaction to ACTIMMUNE, discontinue it immediately and contact your doctor or seek medical help.

What should I tell my healthcare provider?

Be sure to tell your doctor about all the medications you are taking.

Tell your doctor if you:

• are pregnant or plan to become pregnant or plan to nurse
• have a cardiac condition such as irregular heartbeat, heart failure, or decreased blood flow to your heart
• have a history of seizures or other neurologic disorders
• have, or have had, reduced bone marrow function. Your doctor will monitor these cells with blood tests at the beginning of therapy and at 3-month intervals on ACTIMMUNE therapy

What are the side effects of ACTIMMUNE?

The most common side effects with ACTIMMUNE are “flu-like” symptoms such as fever, headache, chills, muscle pain, or fatigue, which may decrease in severity as treatment continues. Bedtime administration of ACTIMMUNE may help reduce some of these symptoms. Acetaminophen may be helpful in preventing fever and headache.

What other medications might interact with ACTIMMUNE?

Some drugs may interact with ACTIMMUNE to potentially increase the risk of damage to your heart or nervous system, such as certain chemotherapy drugs. Tell your doctor about all other medications you are taking.

Avoid taking ACTIMMUNE at the same time as a vaccination.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

The risk information provided here is not comprehensive. To learn more, talk about ACTIMMUNE with your healthcare provider or pharmacist. The FDA-approved product labeling can be found at http://www.ACTIMMUNE.com or 1-866-479-6742.