The NYC Healthcare Hustle
Guest blog post by Stephanie Schroeder, a freelance writer and activist based in Brooklyn, New York.
Three years ago I published memoir about my struggle with bipolar disorder, Beautiful Wreck: Sex, Lies & Suicide. I got a little press, didn’t make a dime, but I did somehow become an instant go-to person in the Brooklyn LGBTQ consumer community on where to find no/low cost mental healthcare care and treatment, and especially how to afford expensive psychiatric meds without insurance or with insurance, but without adequate coverage. I’m a self-taught expert on how to do workarounds of the shitty healthcare systems we have in the US. I call this the NYC Healthcare Hustle, and healthcare professionals and friends alike refer folks in need to me regularly to see if I can help.
Here are a few inquiries I’ve received/exchanges I’ve had on social media in just the past month:
I signed up for “Obamacare” for $490 on January 1. I still don’t have a card and I don’t show up in the system. I’ve made several calls and just get the runaround. Still can’t get the abilify. I wonder if i will ever see a national healthcare plan in my lifetime. I need medical care with this fucking diabetes!!! Fuckers! I feel helpless with this shit.
I would love to have health insurance… That I could afford. The rates are just too expensive for the crap coverage I would be getting honestly. I think the cheapest plan I could get was $250 a month and it was really shabby insurance! I just couldn’t in my heart pay that much for something that wasn’t really covering me… And I do need it, for mental health. I’ve been lucky to find things like the shine program that help get these services for free.
I can’t find a new fucking psychiatrist who takes my insurance or reach my GP to talk about someone prescribing for me moving forward!
I have a question about medication and suicidality. My mind isn’t working well due to a dismal trial on Geodon (which helped me a lot once in the past, but this time the side effects and the side effects of the medicines I tried that treat Geodon side effects are very devastating and not at all tolerable) and due to just its nature, I guess. Abilify. I think you said it saved your life. I don’t want to live my life any more, but at the same time I wish I could at least have a chance at life. My psychiatrist is on vacation (until April 1) and I can’t wait that long. Do you know of a clinic or some other place where I could see a psychiatrist without being hospitalized? I have a private therapist who I adore – she doesn’t have any leads on a psychiatrist (she is a social worker.) I am on Wellbutrin SR (generic) and I think it has stopped working. Do you know of anywhere that I can just walk in for help…?
The Affordable Care Act has not made healthcare better for most people I come into contact with, including myself. The reality is that the actual lack of affordable healthcare is making us sick(er). There are a lot of folks both within and outside the LGBTQ community who need help, need it now, and need it to be free or very low cost. The government of this country, state and city won’t help. I’ve appealed to many elected and appointed government officials in my lifetime mostly without response—or with the most lame, inane and canned responses ever. It’s not surprising, but it is disheartening.
I recently convened a group of radical queers to mobilize on behalf of our community. We are a small group—consumers and providers, and some who identify as both—concerned about the lack of information about and resources, in NYC, for quality, LGBTQ-affirmative, culturally competent affordable mental healthcare treatment and affordable prescriptions. We are concerned about the lack of choices, of various barriers to access as well as the lack of actual providers who are affordable, especially in light of the ACA. We aim to act as a resource/clearinghouse to our community/communities to find and publicize existing free and low-cost resources as well as develop new options.
Following are some ideas we initially conceived:
- Establishing and maintaining a website listing relevant and updated resources for free/low-cost healthcare. This would provide detailed information and tips, not just a web links. We also discussed creating and distributing a zine.
- Creating a cooperative of psychotherapists and psychiatrists who volunteer to take on one pro bono client for as long as they need assistance. This might also involve a community fundraising campaign on a crowdsourcing platform asking folks to donate the cost of one of their own therapy sessions to another community member in need to fund this project.
- Training and coordinating peer counselors to support those in the community with mental health needs.
I’m also personally interested in coordinating a medication exchange. I’m more about rogue than my brethren, even while I respect the limitations of those colleagues with professional licenses. My idea is that folks donate surplus psychiatric medications whether they have extra, no longer take a certain drug, get free samples, etc. These are then passed along to others who need psych meds, but who cannot afford to purchase them, and there are a lot of folks in dire need. I had to stop taking Abilify for several months a few years ago because I could not afford the almost $700 price tag. I lived very precariously without my antipsychotic medication, thank goodness I have an excellent support network who helped me get through it, not everyone does. We created medication exchanges for HIV drugs—we can do it with psych meds.
I’ve applied for a few small seed grants, mostly to get a website with resources up and running. I envision this resource to not be a simple web listing of people and places, but one where those who have worked with, or tried to access, various resources, give tips and where commentary/narrative from those who have researched different resources accompanies listings.
Stay tuned for the NYC Healthcare Hustle Project to launch sometime in the fall of 2015.