Poor quality of care is not a new thing in the healthcare world. My experience over the last 15 years or so with dealing with my HIV doctors has mostly been with OU Medical's IDI Clinic. I am on a fixed income and they are the provider in my area that currently has the funding from Ryan White grants that are provided for those living on a disability income or at poverty level wages. I've had good experiences with OU's IDI Clinic in the past, but as a trend, I can see that things have been getting worse for clients.
For a little background for those who don't know me: I help run an online community of those who are disabled; our number group members is about 2,000. So, I'm not a stranger to hearing about medical issues that arise with healthcare providers. Along with being a good support group for each other, I am in a unique position to hear about a variety of negative issues in healthcare that happen to people aside from myself.
Recently, I had a more than negative experience that I'm finding all too common with how doctors conduct themselves. With my recent experience, I thoughts that I would start writing about them. I am hoping that those that find themselves having issues with HIV doctors or other doctors will find some comfort in knowing that they are not alone and to help in some way let the medical community identify quality care; how to recognize issues within an organization and to set it on a path towards success as defined by client satisfaction and less about arbitrary standards set by their medical environments.
When you have HIV there are a host of related issues that can happen that need to be addressed by your doctor. HIV drugs are highly aggressive as well as HIV itself. If you have listened closely to the end of any commercial about any medication side effects are to be expected. My last couple of doctors seem to very dismissive about medication side effects; as though they are unimportant or because they do not hear much about them that they are not much of an issue. What I think is actually happening is that it is so normal for a person with HIV to have nausea, diarrhea, lack of appetite or vomiting, that it does not get talked about because it is so ongoing that the doctor should already know.
They are already perscribing medications for those things, so, it is not a topic that needs to often be brought up. However, when you or I do bring up having issues with side effects for what they already treat me for, it is as though they are dumbfounded or do not think it is important enough to try new ways of helping control those side effects. There are at a minimum a dozen different medications that can be tried if one stops being effective.
I've seen a list of medications for side effects and without naming them, I know there are medications that my last two doctors are fearful of prescribing that are highly effective at helping with many number of side effects. I've had a conversation about one medication that will help relieve HIV related neuropathy, decrease nausea & vomiting as well as insure a good appetite. It's a single pill that would replace about 6 of my current pills and has a great success rate with little to no side effects or side effects that diminish very quickly, side effects that are not negative in nature. OU's IDI clinic has it on the formulary of medications and when talking about this medication one doctor said they would never prescribe it.
The empathy to care and follow through with the oath to help those under their care has been tainted by political bias and internal moral judgments as patients quality of care is arrogantly being shat upon - and with anger in the doctors voice when bringing up the topic of the medication as an option to help me as well as reduce my intake of medications might be able to remove from my daily routine.
Because of casual office interactions from doctor to doctor, I believe this fear, moral and political bias has become common place for all the doctors at OU Medical's IDI clinic.
And now, all of the sudden I get a call from some doctors assistant or nurse, telling me that medications X, Y & Z they do not want to prescribe because they are (poof) no longer HIV related and they are trying to reduce their volume of refills that OU Pharmacy sends them and could you get your family doctor to start to prescribe please... so we do not have to do it. Also known as, we do not want to do our job anymore.
After getting the call, about not getting my HIV related medications, I called OU's IDI Clinic and asked to speak to their PR department or a manager or supervisor. I later got a called from a gentleman that I heard some of the same buzzwords; Lowering Prescription Refills and needling to free up time for those working: also known as "They have a job to do, but we have found a way to keep them from doing their job and we call it a "process or procedural changes"". My husband and I both express that our medications are clearly HIV related; it is the reason we go there. Also, that we expect them to do their job and if they have a work overload, then that is the definition of needing to hire more people to meet that demand. Sadly, some of the medications they are getting tired of refilling they would send to the OU Pharmacy with no refills on a medication that would normally get from 5 to 8 refills on a standard prescription. Well, no wonder they have more work to do. They clicked the wrong button the last time they filled it.
After that we received a call from the next escalation of the call and what do you know. We stop hearing the buzz words and was painted a pretty picture about how I was put in the wrong pile for callbacks which patiences where going to not get their refills and those who were going to get their refills. What this picture really means is that there are a stack of OU IDI Clinic's clients that they are tired of having as clients and those phone calls are going out and they are sending the message that will be typed into internet searches, "OU IDI Clinic will not fill my medications anymore. Why?" Well, if you are one of those people you have found the right page and you are not alone with this issue.
Just to sum it up. OU's IDI Clinic needs to get back to doing their job; the job of understanding clients needs, empathizing with their clients and taking action and do their job. It really is that simple. It is as simple as putting the full amount of refills on a refill request from OU Pharmacy and clicking that send button. Poof, call volume reduced. Not asking a client that is sitting in front of your face that you do not want to give them some antibiotics, but would prefer them to run down to the ER and tell them to call me when you get there and I'll tell them what to prescribe; since I'm so fearful of writing the prescription myself. No, be diligent to your oath to help those sitting in your doctors office and stop passing the buck to someone else.
We have been assured that we will not have anymore issues. But, I see the hesitation upon every visit. I see that I have to get blood drawn as a fasting lab; meaning they are checking my cholesterol and I am told my reading is too high. The doctor tells me he doesn't want to write the script, but, please just go to the general store and get some fish oil. Why? He doesn't why to write the script. HIV can raise your cholesterol I have been told, over and over. And I am also told, over and over, they are too fearful to take ownership to write prescription for it. There is no logic; there is no sense of reason; there is no sense of empathy for someone who needs a script for insurance to cover my cholesterol medication. That is exactly why I think they will not do it. Medical fundamentalist whom do not want you to use insurance to buy your cholesterol medication, because that would be some kind of Socialist Agenda now, right? Regardless, in any other world, that is work avoidance; not complying to the definition of your job.
If you have issues with your HIV healthcare provider, especially if they are Ryan White grant recipients, speak to a manager, or that managers boss. Lay out the basic facts and just simply ask why they are not doing their job. Let them look into the issue and chances are that they will get the issue fixed.
Please, subscribe to this blog. As I have been reviewing my thoughts about other experiences and will be covering them in upcoming posts.
Thanks,
Day in the Life of a HIV Positive Man
