I usually wait until the end of #HPNAwarenessWeek to share any of my own thoughts mainly because professionally, it is a week jam packed full of events, but also because it often takes me a while to process what I want to say regarding how I am impacted by this week personally.
If you are even remotely involved in the world of nutrition support, you know things are bleak at the moment. Companies are closing. Supplies are in dire shortage. Reimbursement rates are garbage. Insurance is a nightmare. Friends of mine are unable to leave the hospital because no one is able to take them on. Others are being asked to decrease the number of days they receive parenteral nutrition, despite being unable to sustain themselves through traditional means, or being asked to limit their physical activity to minimize hydration needs because the supply is currently unable to meet the demand.
In the thirty one years I have been on parenteral nutrition, I have never wrestled with my own morality more than I have these last three weeks. Even face to face with sepsis, I never felt this vulnerable. I put away my last delivery like I was a museum curator guarding a priceless gem. I do not have the words to describe what it feels like to know that your very life is in the hands of someone compounding a bag of fluids states away. Your very life depends on the ability of a company to be able to secure the correct ingredients. Your very life DEPENDS ON WHETHER OR NOT YOU HAVE ACCESS TO A PLASTIC BAG. Please try to wrap your head around that. There is no safety net for us.
This year, I put together a video which included a series of interviews with long term PN consumers. Some of whom (my sister included) have been on this life saving therapy for almost 40 years, and yet systems still fail to view us as a priority. Some providers don't even know we exist and view parenteral nutrition as a life-destroying last resort, regardless of the dozens of stories we have gathered proving the contrary. I know there are companies working tirelessly to ensure that we have what we need to survive and for that I am eternally grateful, but it is exhausting and discouraging knowing that these shortages will continue, shutdowns will continue, as long as nutrition support consumers are an afterthought. I am able to work and ride horses and play with my dogs & hang out with my nieces & ski & travel & dance & enjoy life BECAUSE of PN. There is no alternative for me. If parenteral nutrition goes away, I go away.
So this HPN Awareness Week, I want you to be aware that this shit is hard. It's hard and it's scary and I don't know what the solution is, if there even is one at the moment. If you want to throw a rock through the window of your local IV lounge, I definitely won't stop you. Keep an eye on organizations like Angels for Change and End Drug Shortages Alliance for action items and updates and please continue advocating for your patients. We are tired.
tech exec - VP of Product & GM @ Stash, Itemize AI, comixology (AMZN), GPShopper (SYF)
6d🔥🔥🔥