By Denise Reich
Remember that poem by Robert Frost about the road less traveled? You may have had to read it in middle school or high school. I did. It probably isn't a coincidence this poem is taught at an age when many of us are walking a very unfamiliar road through adolescence. Does anyone else remember peer pressure? There were so many voices telling us how to dress, how to act, and what shows and rock stars we should like.
Maybe we resisted some of that pressure; maybe we didn't. That pressure didn't leave us in high school, though. It still shows up when we're adults in many places. If we're being treated for primary immunodeficiency, it can surface in opinions we're given on how to receive immune globulin (IG) infusions.
If you go online, the overwhelming consensus seems to be that receiving infusions at home — usually subcutaneous IG (SCIG), but sometimes intravenous IG (IVIG) with the help of a nurse — is the best option. But what happens when you need the road less traveled?
I'm a person who is on that less-traveled road. For several medical reasons, doing SCIG at home alone is absolutely not a safe option for me, either emotionally or physically. Allowing a nurse into my home for IVIG is also a hard "no." Given my comorbid conditions and personal needs, my best-case scenario right now is to allow medical professionals to administer and monitor my treatment in a clinical setting. It allows me to access other services at the facility on the same day as my treatment. It also helps me maintain an emotional division between home and clinic: One is my personal space; the other is where I get medical care. The separation is needed.
Oh, the pushback I've received on that.
I've drifted away from patient support groups because of the huge amount of peer pressure to perform SCIG or home IVIG. Every time I've seen someone mention getting IVIG in the hospital or infusion center on social media, I've witnessed a flurry of follow-up comments by other patients who suggest home care. It just doesn't seem to dawn on some folks that what works for them as individuals may not be a panacea for every patient. There's a lot of talk about the "freedom" that home treatment brings, but how is it "freedom" if we're endlessly pressured toward it with no regard for any personal needs we might have?
When claims are made that everyone wants to be in the "comfort of their own home" for IG therapy, they seem to forget that such a scenario is not the most comfortable for all. It assumes a certain amount of privilege — namely, that everyone has a safe home that is large enough to accommodate treatment, ensure privacy during infusions and store numerous medical supplies. It assumes everyone has a friend, relative or neighbor close by who can check on them and help in the event of an emergency or a severe adverse reaction. It presumes there are no comorbid conditions for which closer monitoring might be prudent. What if you have a tiny studio apartment (like me)? What if you have several roommates and little privacy? The answer to those questions seems to be a collective shrug.
I'm certainly not trying to convince any other zebras they need to infuse the same way I do. For some, being at home is of paramount importance, and I fully respect that. Some have had very negative experiences in infusion centers. The time and expense of travel to a treatment site are issues for many. Others truly do feel that doing SCIG at home offers freedom and convenience. All of those are totally valid reasons — but so are mine for needing a different path.
And that's the point: We all have different needs, and what might work wonderfully for one person might be less than ideal for the next. It's about knowing ourselves, knowing our needs — both medically and emotionally — and working with our doctors to make well-considered decisions for ourselves on how, when and where to be infused. Not what's the most popular. Not what has the flashiest advertising. Not what people on social media are pressing us to do. No. It needs to be about what will work best for us, as individual patients with unique personal and medical circumstances, to provide the most positive treatment experience with the most beneficial results.
One of my worst fears is insurance companies will decide home treatment is the only modality they will cover. For me, that would be devastating. If home infusions were the only covered option for me, I would have to stop treatment, regardless of the consequences for my health. The detrimental effects and risk of having IVIG or SCIG at home would just be too much.
Doctors need to be able to work with their patients to determine the best approach for them, personally. Patients and advocacy groups alike need to respect that infusing at home, even if it works beautifully for them, may not be the best choice for everyone. If you see someone on social media or at a conference discussing how clinic infusions work for them, stop trying to peer pressure them into doing something different. Some of us need the road less traveled, and I hope that can be respected and supported, both on a social and financial level.
Denise Reich lives with primary immunodeficiency, HATS, and a congenital heart condition, among other issues. Her writing has appeared in Shameless magazine, the Saturday Evening Post, The Mighty.com, the Santa Monica Review, MSN.com, the Huffington Post, numerous books in the Chicken Soup for the Soul series and many other outlets.