“A lack of information keeps us from medicine, well-being, harmony…”: a mixed method study with plaintiffs requesting medicines in administrative cases

Soares, Amanda Queiroz; Melo, Miriam Amaral; Silva, Pedro Ivo da; Chagas, Virgínia Oliveira; Provin, Mércia Pandolfo; Silva, Maisa Miralva da; Vila, Vanessa da Silva Carvalho; Amaral, Rita Goreti

doi:10.1590/1413-81232022273.04122021

Amanda Queiroz Soares

Hospital das Clínicas, Universidade Federal de Goiás. Setor de Farmácia Hospitalar, 1ª Avenida s/n, Setor Leste Universitário, 74605-020. Goiânia GO Brasil. amandaqueirozsoares2@gmail.com.

https://orcid.org/0000-0003-4416-1108

Miriam Amaral Melo

Hemocentro de Goiás. Goiânia GO Brasil.

https://orcid.org/0000-0003-1779-5447

Pedro Ivo da Silva

Hospital Municipal de Aparecida, Secretaria Municipal de Aparecida de Goiânia. Aparecida de Goiânia GO Brasil.

https://orcid.org/0000-0002-7441-1852

Virgínia Oliveira Chagas

Universidade Federal de Jataí. Jataí GO Brasil.

https://orcid.org/0000-0003-3470-7234

Mércia Pandolfo Provin

Faculdade de Farmácia, Universidade Federal de Goiás. Goiânia GO Brasil.

https://orcid.org/0000-0001-7529-585X

Maisa Miralva da Silva

Pontifícia Universidade Católica de Goiás. Goiânia GO Brasil.

https://orcid.org/0000-0003-3072-3560

Vanessa da Silva Carvalho Vila

Pontifícia Universidade Católica de Goiás. Goiânia GO Brasil.

https://orcid.org/0000-0002-1785-8682

Rita Goreti Amaral

Faculdade de Farmácia, Universidade Federal de Goiás. Goiânia GO Brasil.

https://orcid.org/0000-0001-8890-0852

Collaborations

AQ Soares: Conception and project; collection, analysis and interpretation of data; writing of the manuscript or relevant critical review of the intellectual content; approval of the version to be published; responsible for all aspects of the study to ensure the accuracy and integrity of any part of the study. MA Melo: Collection, analysis and interpretation of data; writing of the manuscript or relevant critical review of the intellectual content; approval of the version to be published. PI Silva: Collection, analysis and interpretation of data; writing of the manuscript or relevant critical review of the intellectual content; approval of the version to be published. VO Chagas: Collection, analysis and interpretation of data; writing of the manuscript or relevant critical review of the intellectual content; approval of the version to be published. MP Provin: Conception and project; collection, analysis and interpretation of data; writing of the manuscript or relevant critical review of the intellectual content; approval of the version to be published. MM Silva: Analysis and interpretation of data; writing of the manuscript or relevant critical review of the intellectual content; approval of the version to be published. VSC Vila: Collection, analysis and interpretation of data; writing of the manuscript or relevant critical review of the intellectual content; approval of the version to be published. RG Amaral: Conception and project; collection, analysis and interpretation of data; writing of the manuscript or relevant critical review of the intellectual content; approval of the version to be published.

Chief editors:

Romeu Gomes, Antônio Augusto Moura da Silva

Barriers	Participant narratives
Physical capital
	“The insulin I use is expensive. If it weren’t for the process, I wouldn’t be able to take it... It’s too expensive.” Public-G “I went to do (the process) for a drug that is not that expensive, but because I will have to take it my whole life, it becomes expensive.” Private-G “Three ml of insulin for R$90 (US$55.97)... I use four needles a day... a box of one hundred I now pay R$60 (US$ 37.31)... for us it’s difficult ... it’s price research, it’s chasing it, because at that time it’s our money that comes out of our pockets to buy these things...” Private-G “My medicine is expensive, R$250 (US$155.47) a box. I kept asking for help from the church, asking friends... I’m asking others because I can’t afford it.” Public-G “The dermatologist: ‘This cream is expensive... 99% I guarantee that (the skin) is normal. But it’s too expensive, you can’t buy it. I’ll give you this one for R$10. You go there and buy it’. I used it and it didn’t help at all.” Public-G “I thought: instead of taking two pills, I’m going to take one. God will help and won’t let anything happen, because I don’t know if I can get another box.” Public-G “He was without the medication for about four to five months... the last month I got it... it costs R$130 (U$ 80.85), the medication only lasts 14 days. I had no way to keep paying for that.” G-Public
Natural capital
	“I think it’s bad (not getting the medicine through the SUS), because I have to take it from my salary and then sometimes the diet is less. Because people with diabetes have a diet, right? And people say no, but it’s expensive, you have to have a strict diet.” Public-G “We don’t have the natural things, it’s natural for you to have rice, beans, meat, vegetables, clothes, shoes, go out for ice cream, go for a walk. He can’t, because his skin is all wrinkled, understand? It hurts, itches... So like that, he gets troubled.” Public-G
Human and social capital
	“I think the person should be registered... You have to have control over who needs and who doesn’t, in reality. Because otherwise, I see there, many people arrive in their cars at the door, come to get the medicine here, taking the place of many people.” Public-G “There is no need for the social worker to go to our house... by law, it is the citizen’s right to receive their medication. You can be rich. And there’s no social worker to go to your house to find out if you can afford it or not.” Private-G “That so much stuff... wanting to know how much I pay for energy and how much I pay for water... There’s a law, it’s there, now if you earn a little or a lot it doesn’t matter.” Private-G “If the medicine is for one, it is not just for one, it is not just for the poorest, it is for everyone! And there are resources for that, so we have to charge for it!” Public-G “They talk about the Public Prosecutor’s Office, just like Mom’s doctor... but as I already knew about Dad’s (process), I said: ‘There’s nothing about the Public Ministry, we go straight to the city hall. Dad, Mom, I know what I’m talking about’”. Public-G “I went online and found the number. Because I didn’t even know how to guide myself, the doctor just said that I have to go after it... that it was difficult to achieve.” “It’s common for Brazilians to be uninformed, nobody looks... I’m part of the Health Council of the maternity hospital... See if a mother goes there... help to discuss... see if the population goes.” Private-G “I didn’t even imagine that the municipality provided it, as I found out about it through the psychiatrist... Then... I went to the private doctor. I was the one who told him: ‘Look doctor, it’s on the net’. And he says? I didn’t know!’... He started talking to other doctors, other patients... because of me.” Private-G “If I have information, I’ll pass it on, understand?... I’ve seen people complaining in the hospital. I said: ‘Look, you go to the city hall... you’ll get it.’ Public-G

Barriers	Participant narratives
Medicines
	“Many things are lacking in pharmacies... usually they never manage to get them all... there are days when people get there and can’t even get a dipyrone with a prescription from the doctor there, because they say they don’t have it.” Public-G “In my own neighborhood I’ve never been able to get a medicine... because there’s never a medicine there, never, never... every time I go there they say they don’t have it, that it’s finished. Then I go to the pharmacy in Bairro Goiá... When I get there, they have the medication and they provide it for me.” Private-G “I was here yesterday to get my medicine again (through the process)... Lantus was missing... Talking to the girl, I said that last time I didn’t have a needle. She said that they haven’t been delivering needles for over a year.” Private-G “I did a process to get everything and there is a lack of medication.” Private-G “I was able to get Clopidogrel there at SUS Pharmacy, then it was only transferred to the District Pharmacy... For me it is against the grain, because Cais is closer to my house. They should make it easier.” Private-G “They informed me where I’m going to get the meds. It’s not just here, it’s at Cais and I don’t know where anymore... It’s where the medicine is... then it’s complicated... I already get medicine here (by administrative process), so other medicines could be purchased and sent here.” Public-G “The name already speaks, right? Generic! I pray to God when I take the pill.” Public-G
Financial, infrastructure, human and information resources
	“Our taxes... had to be better used, reverted to health... there had to be an appreciation of the structure that already exists, improve this structure and the professional who serves, provide training.” Private-G “Whenever I receive those little letters from SUS asking how I think the service is, I respond via the internet saying that it is terrible, that the structure is bad.” Private-G “I think two primary things are missing. First education, I think that wherever you go you have to be well attended... Secondly, I encourage training, I encourage information, I think that the employee who seeks information has to be better paid, they have to be better treated by the government... I think they are the two basic things: education and information because no one knows how to tell you anything.” Private-G “There is a lack of information on the part of the people who file the process, they don’t know anything, they haven’t seen anything, there’s no phone to give us... ‘Oh, I don’t know! I do not know! I don’t know!’ Ah, so what are you doing there my dear? Do you know why? Don’t want to inform? It’s in the wrong place! You have to put a person who likes to talk and communicate... The lack of information takes us away from medicine, well-being, harmony.” Private-G “The doctor enters the Unified Health System and has no training in what happens. He knows that he has to consult and prescribe the medication... they don’t know how to refer you... We get there waiting for them to have information, nobody tells you anything.” Private-G “The place he (the doctor) does not want to work is in the SUS, because it pays less.” Private-G “No doctor wants to work at the SUS, because the salary is not good and the service is too much... there is no time to eat, there is no time for anything.” Public-G “Doctors know that there is no medicine at SUS Pharmacy, how do they give us the prescription? They should get their bearings first.” Public-G “At the pharmacy, they should say ‘There is no such medicine here’ and indicate where they have it... They have to give us an option, not just say they don’t have it and you go away.” Public-G “My doctor gave me the report... He said: ‘There’s medicine here, but it’s not cheap. You’ll have to go through the Public Ministry, you’re going to do something, I don’t know what’... He made a seven-headed thing for me, it seems that the proess isn’t even that difficult. I went, talked to the social worker... (Doctor) even told me that by the time I got it, sometimes I had almost died.” Public-G “Oh the difficulty, oh bureaucracy! I went to that office several times and the information was not very correct... the social worker called me for thirty days and made the visit... then there were about sixty days. I called... then they said no, you have to wait... They said they would let you know, but they didn’t. And this thing (medicine) was already here for two weeks or twenty days, already available.” Private-G
Quality
	“My case took longer, it was even frustrating, because it took me almost a year, or even longer, to get the medications... and there was still an error in my process.” Private-G “You need transport to go to the place to get the medicine, they have to go to the doctor. And it’s not easy to get an appointment... You go to the place several times. Emotional wear... which all generates expenses, physical wear, people get emotionally shaken. So, it’s a series of things that get worse.” Public-G “I also found these processes a little disorganized, as in most public bodies. Bureaucracy makes the process take even longer. So for me it was very frustrating.” Private-G “We already go through the embarrassment of having to ask for the medicine... It is already within us that we are not normal... that we are in need of a little fix... Then we go through the process of asking (the medication by process) and people make light of it, show a lack of respect, indifference.” Private-G “It gets tiring... you’re already so stressed, tired... that the whole process becomes a little humiliating. It feels like you’re begging... the feeling is that they’re doing you a favor by serving you... that you’re annoying because you’re looking for your right, that you’re asking too much.” Private-G

Barriers	Participant narratives
Governance of pharmaceutical care
	“I filed (the process). A long time passed and they returned the process to me... I had to change (the prescription) for the simple one. There in the office they were not serving private prescriptions and my prescription was from Ipasgo (health plan)... and I already had it here (by administrative process) and I was accredited by Ipasgo. It’s the same doctor, who has never changed... this business of changing the prescription is very difficult. You go, you have to call, make an appointment... and the doctor will only repeat the prescription.” Public-G “This question of prescription I think is impractical. Why?... People go to the Cais, take up space, waste time, waste the doctor’s time... take the place of someone who could be doing that there... wandering often cause such inconvenience to the patient as for the government... If it was modernized, less money would be spent, there would be more doctors.” Private-G “She received it fast... The problem I found was that when she was admitted there, the Ursacol she uses couldn’t be just that name. The presription had to be changed, it had to be ursacoluso (ursodeoxycholic acid).” Public-G “The drug is for continuous use... it is forever, it’s until you die!... That this record exists, for example, in the units, so that you know that... at the beginning of every month, so-and-so, so-and-so, so-and-so, will be here looking for medication... So be ready! Now send the report!... As soon as you type there... Ok, your medication is here, it’s reserved, almost with your name on the box.” Public-G “If they would make it easier... this distribution, because it’s all in the municipality... For example, here there are times when we can’t get syringes. And there are syringes at the municipal health unit, but they don’t give syringes because I don’t take NPH insulin there... I think it’s so lacking to do everything in one place, to organize, even to save money, save time, save employees.” Private-G “I think it’s wrong for everyone to get (medication) here at this pharmacy. It could make it easier for all patients to transport them to the health posts, pick up at the health posts closest to our residence.” Private-G “They should decentralize this (administrative supply of medication), have more units... We live reasonably close, but there are certainly people who live farther away.” Public-G
Governance of the health sector
	“I need the medical report, but I can’t because there’s no doctor where we live... You have to make an appointment at 0800... If you call from a normal cell phone, you can’t. Look for a pay phone, don’t you think. Understood? We face a lot of difficulty.” Public-G “The girl said I needed a recent prescription and I don’t have it. So I think I won’t be able to get the medicine... it’s going to be very difficult... and that’s where the medicines they gave are gone.” Public-G “If they asked for the prescription, but kept giving the medicine until you brought it, you wouldn’t be without the medicine. Sometimes I make an appointment for my mother in six months. Three months without taking the medicine... she can’t stop taking it for one day!” Public-G “Both the SUS and private prescriptions should be accepted to get medication. Because? Because many times you see your relative, your father dying there and you don’t have the care. You get there to make an appointment, make an appointment for three, four months, a surgery in a year... At the time, everyone pays, the family gets together to pay for a private appointment. Then you get the prescription and you can’t afford to buy a medication.” Private-G “They make it very clear, it has to be a SUS prescription... I think it’s wrong because we often pay for a plan, it’s not because we want to be better than others, it’s because the person really needs it... if (father) get sick and goes to SUS he will die. So we do everything, we give up a lot to be able to have this plan.” Private-G “I used to do my son’s private treatment, but it started to be very expensive. I started and went back to the public network... but it wasn’t as effective as being in private, so we decided to go back again... Not very satisfied, I thought: There must be some way for me to get this treatment for my son... which is borne by the government.” Private-G “If the person pays for a health plan, it is a sign that the Unified System is not working, at least on the part of doctors. Many people prefer to get the drug in the Unified System which, despite taking a long time, you can do it.” Private-G “With this PSF (Family Health Program) business, either you are assisted at that health center or you are not assisted. I think that’s bad, because if a person left one place and is going to another, it’s for practicality, it’s because it’s emptier, because of the education of those who are serving you, because of the quality of the professional who is working there... The government took away this possibility of the person choosing.” Private-G “Here (Pharmacy) there are days when... it’s crowded... there’s no employee... There’s a competition, but they don’t call people. Then there is a lack of employees and they have to split into ten to do everything here. We see that it’s not them... I’ve never been underserved here... I think what’s needed is for the government to invest more. Just like the time it flooded... it’s a place that stores medicine, you have to be more affectionate, because these medicines are very expensive... They have to do their best, but when they try to do it, they don’t have the means. Then it gets hard!” Private-G “My (private) doctor every month... gives a lecture... on a new subject... This week we had a lecture by a dentist talking about what care a diabetic has to take with their mouth. So, it’s something the government has available, there’s a doctor who knows about this, there’s a dentist who knows how to talk about what we have to have... We need to look for the private service.” Private-G “Who owns the money? Us. Who is managing the money that so-and-so and so-and-so come to get these medications every month? Will it cost a hundred thousand? So every month there has to be a hundred thousand for these people, apart from the new ones.” Public-G “We are very abandoned by the government... the doctors’ business, all that stuff, health in general... We watch it on television every day.” Public-G “As much from diabetes as it should have from any other health problem, having the diabetes sector. Where there are people who are giving lectures, bringing knowledge, because one thing is for the mother to say, another thing is for the child to hear from a professional... it is important for us to have quality of life, there would be fewer people who would be sick... problem of gums, speech therapist, cardiovascular has several consequences. People that once a month wouldn’t be difficult, it wouldn’t be any aberration for the government.” Private-G
	“The Unified Health System, the program itself, in theory, on paper, it’s very beautiful, in practice it’s not... Doctors won’t work, when you start to create... the bond.... disappears, doesn’t gives justification... They disappear with the files... the fault of poorly prepared, rude attendants.” Public-G “Unfortunately, today, things work like this: there are things, there are places you go that work very well and there are places you go that unfortunately I think the government doesn’t look at what’s happening there... I think the big question is that. You see it’s two organs, it’s the same thing and it works completely different. It’s a matter of administration.” Private-G “One question I have is when a patient is underserved by the SUS, that he or she will complain. I never heard that there was a result in that complaint, because if you go, the same doctor is still there today, a thousand people complain about him, but he is still there. I don’t see any improvement, where are our complaints going?” Private-G “I tried calling that 0800 number to complain, who said we can talk? Nobody answered.” Private-G

Barriers	Participant narratives
Market forces
	“The city hall there (where I previously lived, in another state) partnered with the pharmacy... a group, a large company. They could partner there to give lectures... They also provide samples for people who cannot afford it... The pharmacy also profits from this, because medication for diabetics is expensive... The Health Department there also goes to schools... So everything is important. When you have this partnership, it even favors the Health Department, fewer people will look for it... to be able to receive medication... There are other means that can help...” Private-G “Of course, the bureaucracy is less in the Popular Pharmacy. You get there with the prescription, with the document, take it out, get it. These days it was a little more complicated... But, even so, much faster, much more practical.” Public-G “Sometimes I need simvastatin and diamicron, they charge a fee at the pharmacy (Popular). Do they really have the right to charge this fee?... Sometimes they don’t have it in the network and we go because we need the drug and they charge a fee.” Private-G “The drug Losartana... I use 120 pills, but I only get 50 (from the Popular Pharmacy). The other part I have to supplement, I have to buy, because they only give 60 pills. And if you go there before 30 days, you don’t have to go... I think it’s bad because I have to take it out of my salary.” Public-G “I’m already afraid to buy generics. But... lately I bought it because it’s cheaper. God knows if it’s going to be good. But to do what?” Public-G “Did the doctor prescribe it? It’s what the doctor prescribed! Our taxes are there, for that, and not for them to mess around in the squares... in traffic... advertising with our money. It’s to use and revert to our benefit!... But we have to charge! The right is ours! Public-G The private service does not charge devices that its SUS provides, does not charge for the medicines that SUS provides. SUS is excellent... it helps a lot of people, it helps us. The private service has a certain surgery, they say they don’t cover it, they don’t provide the medicines we use. So is the private service good? Yeah, how profitable is it for them... So is the SUS good? It’s good, it could be better.” Private-G
Transparency (price, source and quality of medicines aquired)
	“Bureaucracy is a methodology to avoid fraud and corruption, but it has become a problem for us... First, we have to avoid excessive bureaucracy. And second, informing about the standards... Everyone has to be aware, those directly involved, the attendants, the doctors, the pharmacists, they have to know and know how to transmit it to us, otherwise it’s one way, another time is from another.” Public-G “You have better care at SUS if you have an influence. The father of a student of my mother was an orthopedist in the private service... He called a SUS doctor: ‘I have a patient here who will need surgery, can you find a place for him?’. The other doctor said: ‘You can come tomorrow and I’ll admit you’. I was hospitalized the other day and had a very complicated surgery... If you don’t have someone you know, it’s very difficult for the Unified Health System.” Private-G “It was very fast... Here it took a while because of the bidding process... I have knowledge there with the supplier. I called a friend of mine there and said “Help me, I have my son’s process to get medicine, are you the city hall’s medicine supplier?” I gave the process number... He ordered it delivered, the other day I came and got it. ...For me it was fast.” Private-G “We pay a lot for our taxes... but the problem is the amount of embezzlement, theft, so much dirt that it doesn’t let the money be used well... Goiás is an emerging state... but public health is chaos.” Private-G “They say that there is a law there, that you must go through the doctor. But you go through the doctor in “quotation marks”... they informed me that they get paid for the consultations... They don’t even look at you or anything, they just ask if everything’s ok, ok, you sign and leave. I even think it’s ridiculous.” Public-G “In the election year it is good because there is no lack of medicine in the pharmacy. You arrive and get everything on time.” Private-G

[1] Collaborations

AQ Soares: Conception and project; collection, analysis and interpretation of data; writing of the manuscript or relevant critical review of the intellectual content; approval of the version to be published; responsible for all aspects of the study to ensure the accuracy and integrity of any part of the study. MA Melo: Collection, analysis and interpretation of data; writing of the manuscript or relevant critical review of the intellectual content; approval of the version to be published. PI Silva: Collection, analysis and interpretation of data; writing of the manuscript or relevant critical review of the intellectual content; approval of the version to be published. VO Chagas: Collection, analysis and interpretation of data; writing of the manuscript or relevant critical review of the intellectual content; approval of the version to be published. MP Provin: Conception and project; collection, analysis and interpretation of data; writing of the manuscript or relevant critical review of the intellectual content; approval of the version to be published. MM Silva: Analysis and interpretation of data; writing of the manuscript or relevant critical review of the intellectual content; approval of the version to be published. VSC Vila: Collection, analysis and interpretation of data; writing of the manuscript or relevant critical review of the intellectual content; approval of the version to be published. RG Amaral: Conception and project; collection, analysis and interpretation of data; writing of the manuscript or relevant critical review of the intellectual content; approval of the version to be published.

Brasil

Brasil

“A lack of information keeps us from medicine, well-being, harmony…”: a mixed method study with plaintiffs requesting medicines in administrative cases

Abstract