Mental Health Awareness Month with Affinity Patient Advocacy

Christina: Hello everyone and welcome to another episode of I am Christina Diarcangelo. I have a familiar guest and friend and face today on the show, Tiffany Watkins. Thank you so much for joining us today, Tiff.

Tiffany: Thank you for having me back on I always love my time I always enjoy our conversations it's always fun. We always have a good time when we talk.

Christina: And so today, um we are talking about I mean I feel like every one of our topics are important but as we are gearing up for May at the end of April here we are gearing up for mental health awareness month as well as a focus on opiate abuse as it relates to mental health because a lot of uh unfortunately a lot of people that abuse opiates are mental health patients that are trying to seek solace and being able to have opiates and so today that is what we're going to talk about so thank you so much Tiff for joining me, um just for our viewers and listeners out there as a reminder, Tiffany sits on the board for Affinity Patient Advocacy as well as the fact that she's been promoted to the executive leadership team and is now a vice president of the board so we're coming to you from the APA angle today from the executive board angle to talk about this very important topic today, Tiff would you like to kick it off.

Tiffany: sure I'm happy to and thanks again for this conversation it's so important that more people have these uh types of talks and hopefully our conversation will spark that for them um you're right opioids sit at the uh at the top of um you know addiction uh overdoses death but mental health is inserted in there at so many different points look people get um in pain people have chronic illnesses chronic pain alone can put people deep into depression so without any medication at all people are dipping into the lowest States they've been in in their life just because they are in just ailment and that ailment is bringing them lots of pain um and then you know they get prescribed medications to take, I don't believe these people set out the average person doesn't set out to become addicted to a medication to be Reliant upon it for their very well-being so they can open up their eyes and every morning so they can step out of bed every day um so you know it is it's like one of those unfortunate happenstances right so what we really want to bring awareness to is the fact that the cycle starts from a very innocuous place it is it is very much so I just need something for my pain and then they get prescribed something and that medical is so heavy so the body becomes reliant upon it almost immediately and then they get caught in the cycle I don't want to I don't want to feel bad and so they're using the medication to treat the pain but then suddenly use the medication to just feel good to just alive and that is where the problem is this is what we need to figure out a way a pathway for folks to be able to manage pain without becoming addicted to opioids and other medications right there for us to dive in.

Christina: I agree with you completely, um you know uh especially since as you know we were all working on the diabetic neuropathy study through Affinity bio Partners spectral and Affinity patient advocacy and so we heard it first from the patient's mouths this was a DN study but the underlying effect if you will for these patients are pain so these are really sick individuals that are riddled with or ridden with pain and so of course they're going to be anxious and depressed because they can't get down on the ground to play with their grandchild or they can't get up to go to work that day because the pain is so bad and then they feel so terrible about the fact that they're always in pain mentally it just is it just keeps going around and around in a vicious circle and so yes there are things out there that are non-addictive non-habit-forming but we you know the media has done a good job and so has some of the concentrates in healthcare and even unfortunately I have to say politically have gotten involved in some of these things that are not their place to be involved in this is patient care and when patients don't feel well they need to have their voice or someone like us you know through Affinity patient advocacy to step in to help provide them a voice so they have adequate care for them.

Tiffany: agreed they do people deserve advocacy, um if for nothing else like you said for them to have a voice because when you are battling a chronic illness and pain it's very easy to lose your voice and become very overwhelmed in the process by itself and there needs to be more um you know thought-put to patient advocacy in every clinic and every hospital I know that they try their best and I know that there's overcrowding I don't want to not acknowledge that but I think that the average person needs to understand where they can help and how they can help and being there to provide a supportive voice for the person who is battling not just trying to talk about what's going on or the care they need but they're battling the illness too um we can just I think what I'm saying in short is that we could really do a lot better to help each other but uh you know uh that's what we really truly work on and that they think that's at the vein of the existence of what we do as a board is find a way to provide voice and support because it's uh it's Paramount it really is.

Christina: Yeah and you know the thing is that we understand the patient's perspective because we've been working with so many patients over the years and they feel comfortable sharing with us um how they're feeling and things that they feel that they need to share they feel comfortable because we are not their nurse their doctor we're not any of those people we're not their sister their brother whatever you know we are just as a group of people that are Standalone Advocates who are there to listen to whatever it is that they have to say so they're inclined to share more information with us because we don't judge them we don't complain about it so in other words we don't say back to them oh are you done yet do you have more to say no that's not we truly are active listeners to these people and we're empathetic and we've truly try to see things from their side we step in their shoes which most people in professional situations don't do that and so that's what happens these people don't have somebody seeing it from their side they just know the clinical side or the medical side or the health care side the insurance side the pharmaceutical side they know all those things but they don't  veer into this side that could be uncomfortable for them because now they're being told stuff that they should know but they're choosing to kind of block out because they know what they know and that's all they want to deal with is what they know we're not like that you know we know things but we let them talk to us and tell us what it is that that's bothering them and you know how many long haulers have come to us that had mental health issues and that has nothing to do with opiates at one point another they were probably on opiates for pain issues and otherwise um but there were so many long haulers that have mental health illness issues that either they had prior or after either they got coveted or they were taking the vaccines and I'm not bashing the vaccines I'm just saying this is what we've been seeing in our company when these patients come to us so it's not puffery it's not claims it's a reality we've been seeing it we've had people that wanted to kill themselves they were ready to do it so thank God we got in there and we rolled our sleeve up and we stayed with them and followed them until we got them off that bad path that they were on that day ready to put one in their mouth.

Tiffany: right no I mean you can't say enough for what I like to call The Human Side um and you know just to take a step back to what you were saying before about you know the doctors clinicians and facilities can offer a lot they can get you out of an emergency situation they can provide medication for pain they can provide all sorts of insight into the body but the one part that often gets lost because of the volume of usage is the human side and that is the listening that's listening to everything that just went wrong in their day from sunrise to sunset it's lending that time but also the other side of what we do because we are not clinicians we are not we're not boggled down with having to bring in patience and treat and diagnose we actually can take the time to find different resources outside of a hospital or facility or your or your clinics we can find different resources to help you know patients deal with a lot of things when they're in chronically ill starting with the illness but it ends with who's making them dinner that day who's picking up those groceries who's grabbing the dry cleaning who's doing the laundry things like that and we can find resources for patients to help again supporting that human side of illness and see when they're on medications as heavy as opioids and things like that those the first things to Fall by the wayside self-care does the thing take for granted people need this support once they're on these medications their self-care starts to fall to the side they're not bathing regularly they're not eating regularly they're not hydrating regularly they become dependent on medication they're just ruled by medication and I think that what we're saying here is that that intersection is not only I mean it's deep and we can see it but something needs to be done in order to not have folks who are chronically ill, Maybe not mentally ill fall into mental illness brought on by medication brought on by opioids this this is this is why what we're slowly describing here is the crisis.

Christina: yep and how about paying attention to the drugs they were already on and I'm not saying drugs illegal drugs I'm talking about their medicines okay so let's talk about a patient that's taking SSRI’S already for their mental health they fall down and now their doctor decides to give them opiates because of the pain because the pain is so bad that now they need something to help with their pain but at the same time they also put the patient on gabapentin which for those that are out there listening to this show we've talked about gabapentin and um Lyrica and those drugs as it relates to diabetic neuropathy with both Dr Donner and Dr Tai we have had them on when we were working on the DN study we talked specifically about these Gabapentin is prescribed for pain um inflammation neuropathy those are the indications that have been approved for Gabapentin however people sometimes Physicians prescribe Gabapentin for off-label usage for anxiety so let's talk about this we have a we have all these SSRIS so for everybody out there ssris are for mental health treatment okay they're taking drugs already for mental health treatment then they give them opiates because they fell down and hurt themselves and they're in extreme amounts of pain so they figure let's give them that okay then we're also going to prescribe Gabapentin at the same time, okay so that's supposed to be for pain and inflammation allegedly but we're already giving you opiates that's supposed to be for pain right and you're taking all these ssris and opiates counteract in my opinion with mental health drugs and then you have this Gabapentin you're taking which you know that they use off-label for anxiety well you don't know as a patient because it's not disclosed they tell you it's for inflammation and pain so you're taking all these what do you think is going to happen to these people are they going to get off their bed at that you know from day to day no they can't get out of their bed  anymore because they become depressed by all these things because everything is interacting with one another.

Tiffany:  yeah you know the contraindications on medic on medicine are not always the life-threatening immediate emergencies sometimes we have to look a little deeper and go for long term ever been prescribed something and then prescribe something else to counteract more Society fiction that's another form of contraindication on Medicare for medicines and I think that that Trio that you just described is one that is very detrimental because it starts to break down the mental state you know the ssra is there without just so everybody understands we uptake um in our chemicals in our brain we uptake serotonin and sometimes when you have an imbalance you will you will uptake it and then re-uptake you'll keep taking it and what happens is you start to fall into depression anxieties and things like that well what is uh ssris a serotonin The Selective serotonin uptake in inhibitor and a reuptake inhibitor And So It causes your brain to not continuously recycle these types of things now that sentence I just said was a lot that medicine alone is already doing a lot chemically in your body and now adding on two others that have indications that can do similar things is a lot and these things are worth talking about because this sits the Apex of most people's lives yeah get prescribed those types of things more often than anyone.

CHRISTINA: Else this was middle class this is middle class and this was my mom as you know Tiff knew exactly who I was talking about when I started talking about this because I couldn't control this and I'm the CEO of a non-profit and when I was talking to the Physicians about getting her off the oops getting her off Gabapentin it was they were resistant I'm not a physician I only had power of attorney so I was handcuffed to what I was able to do folks my mom died January 13th of this year what's that say okay so where's Tiff and I well that's one of the reasons why we wanted to talk about this today was because we had been working with my mom's Keith since March uh 24th of 2022 when I rescued her from the entrapment in the basement when she was being trapped in her basement and that will be at some point we'll talk about all that on a podcast but Tiffany being on our board she immediately was tapped in the entire board was working on my mom's case to help her get out of the mental health state that she was in could you imagine what she was she was locked in a basement in her own house in a dungeon and couldn't get out and she's a mental health patient bipolar so and then now we get out we went into a mental institution we got her recalibrate it with her mental health and then she's had several breakdowns also a stroke and then November gets Oxycontin coding and um Gabapentin prescribed this was from March till November this was my mother's life okay oh and she had coved in July this all happened in this time period and they decided this was a good idea why didn't they review the entire chart of this patient and again like we said earlier put yourselves in their shoes and look at it from their Viewpoint rather than looking at it from your viewpoint which is in your brain

Tiffany: yeah that's a lot the spiral um effect for your mother was rapid and I think that that bears uh you know a few sentences there it's it was so rapid it was almost as if you did you knew it was you saw what was happening but you couldn't see it coming um that rapid uh decline is I think takes Everyone by surprise and before they know it their life is in shambles or a family member is watching another person's life go into shambles and they're just like whoa scrambling what do I do and you know again why we need more advocacy why we need more people stepping up and going we need to figure out something else and most importantly to me as a patient advocate and ADV and activists for over 30 years um we need people to have freedom to choose freedom to choose therapies that may not be standard therapies for folks to take a look at other medications herbal medication fungal medications are your Vedic medications and make a choice because a lot of times people are presented with one choice let's be generous two choices take this medication here's your prescription or stay in pain and the average person doesn't always know to look deeper to look elsewhere and let's face it we've had campaigns especially across the world but especially in the United States we've had huge campaigns against trying anything that wasn't the pharmaceutical medication.

CHRISTINA:  that's right and then when there are drugs that are approved you know from an FDA level these patients you know have the right to be able to get these through their position and be prescribed these products that supposedly are supposed to assist supposedly in the same sentence sorry it's supposed to assist them um and then it ends up kind of hindering because they're not always informed of the side effect profile these elderly patients are not going to take a prescription packet you know they're not going to take the prescription thing read all of the documentation from the pharmacy that's pages long for their side effects they're not going to do it and even if they do they're not going to understand everything because they don't have science degrees so who do they call then they get on the phone do they call the pharmacy okay the pharmacists are under a lot of stress and pressure since covet they're still under those I don't know about you Tiff but when I go to my Pharmacy here locally I sit in line for 15 minutes waiting for my prescription that I was supposed to be picking up because I was notified to pick it up then and I can't even get it and then when I finally get it it's a quick one two three like birthday what are you picking up and out the door you go and they ask if you have questions for the pharmacy however you're in a drive-through and even if you're there in person it's the same Shenanigans so elderly people and other patients who are not Elders that don't quite understand they don't have the resources to be able to go Hey listen I'm concerned that my heart rate might drop or it might increase or I might have you know dry mouth which thereby means I won't hydrate properly then I become dehydrated all these things just like you said earlier becomes a spiral effect.

Tiffany: yeah it does, and that uh that decline I feel there's something that we we can do about it and so I know that my call to action if you want to call it that is to uh reach out to advocacy groups reach out to us but I like to be fair and go if you're not going to reach out to us reach out to someone and ask and an opioid crisis with a human being could be closer to you than what you think it can be in your family right now and you don't realize it so ask questions and reach out to someone to to give help even if it is just one hour a week something one hour a month every bit is useful and we really need that human side we need it we need of it because this is a crisis they say it on the news you read it in articles in the paper magazines but we can't say it enough.

Christina: absolutely right as a matter of fact I know you saw my post come up on Sunday from The Wall Street Journal which was hard and fast um because uh for everybody out there in case you didn't get to read this article it talks about how Purdue Pharma specifically the Sackler family provided funding to a national level non-profit organization that controls policies as it relates to Health Care they've got 19 million dollars over a series of about eight six years I don't know exactly how many years but you know for organizations like ours Affinity patient advocacy we do not accept money from parties that are involved in things that we cannot Integrity line up with so this obviously raised my eyebrows when I read that from the non-profit sector I've also raised my eyebrows from the advocacy side of things knowing that both of I had two family members and my brother and my mother both suffered from abusing opiates and so here it is again in my face and they're talking about the fact that these guys are pay to play and these guys the other side the nonprofit was willingly accepting their their Monies well what is going on here folks how could we write policies properly and influence policy if we're being paid off so these are things that not everybody gets to read about and it's our jobs to make sure we share this information with all of you guys so that was one of the reasons why again we wanted to have this podcast in the spirit of mental health awareness coming up in the next you know couple of days here we wanted to make sure we connected with you all so that you know that we're watching things and we're trying our best to put our foot forward to help patients like you out there

Tiffany: yes indeed

Christina: I get passionate about this stuff because it's stuff we talk about all the time you guys we talked Tiffany and I and and most of the board we talk about these things all the time in just everyday discussions that we have that aren't always patient related because these are things that keep us up at night we worry about these things so if there's ways that we can help you you can reach out to us and the best way to do it is just shoot us an email info@affinitypatientadvocacy.org if you have a problem that you think that we might be able to help you with even if we can't help you we will then try to find somebody who can help you because we don't want to leave you high and dry

Tiffany: that's right

Tiffany: we're trying for no patient left behind

Christina: that's right all that really means is just reach out with anything

Tiffany: uh Christina is saying reach out even if it is to ask a question if you're not a patient you're not suffering from anything you just want to know more. please reach out to us we'll invite you to a conversation this is live and breathe this constantly it is for most of us our way that we give back because the way that we pay forward and we want to encourage everyone to do that we're not elitists we definitely this is you me anybody and uh anyone can help questions if that's all you have

Christina: thank you Tiff and thank you so much for being on today and talking about this very important topic we hit a lot in this one podcast but they were all important things I felt that we you know and I know you did um because you kicked it off and then we just ran with it so thank you so much for joining me today

Tiffany: of course thank you so much for having me back to talk about this

Christina: absolutely so as we always say remember we are the same I am Christina Diarcangelo thank you so much for joining us today