Our survey showed that the initiation of patients' †therapeutic itineraries did not concern the main course of care, generally surgery (if necessary) and chemotherapy, but sometimes radiotherapy, examinations and, more broadly, the phases preceding this main course or following it. Examinations are generally problematic, in the sense that their availability is not guaranteed. These problems are all the more present when dealing with care structures far from the university hospital, as shown in the interview below:
"Until now, we have been able to have free chemo sessions, scans and certain analyses, but we have to go elsewhere when the analyses do not exist here. We had problems when she had complications in the brain, these analyses cost 2000 DH‡, and they did not exist in the hospital, neither in Sidi Said nor in Mohamed V. So we were obliged to take an appointment here, at the CHU, we had an appointment for one month (...)
- So, what are the things that your mother has been paying for all along?
- Doctor's fees, biopsy, MRI, ECG, chemo tests, injections at 100 DH, and treatment after chemo.
- And the analyses for the ganglion, did she also pay for them?
- Yes, the biopsy at Moulay Ismail Hospital, but the analysis at the private laboratory at 600 DH. Ȥ
In addition to these problems of availability of medical services, there are problems of transport, as patients have to travel from their homes to the place of care or examination. Depending on the circumstances, transportation problems also involve accommodation problems, if patients are received as outpatients but cannot be cared for on the day of their arrival. In general, however, patients note the advantages of the RAMed and consider quite unanimously that "without it, [they would] not have been able to be treated". Nevertheless, their journeys are marked by payments and these are linked to deficiencies affecting the place of care to which they belong.
3.1. The unavailability of care
The notion of deficiency appears to be important for qualifying the unavailability of care. Under the terms of the law instituting the RAMed, as well as from the point of view of the organization of the health system, not all care and not all examinations are and need to be available in each medical facility. Some require the presence of a category of care or examination, others do not. We considered unavailability to be a deficiency when the care or test was supposed to be available but was not. The interviews conducted with medical and nursing staff were very useful in that they gave us an overview of the care and examinations available and supposed to be available in the various institutions.
In fact, the medical pathways appear to be riddled with deficiencies:
"People in Oujda [the respondent lives in Oudja] do the chemotherapy sessions, but when they want to do the radiotherapy, they have to go to the clinic and there they have to have a lot of money.
- And what did you do?
- We came to Fez where they refused to give him radiotherapy and then to Rabat where we were told that radiotherapy was available in Oujda. In Oujda, they gave us a technical form (sic) to get rid of us. When we showed the form to Fez and Rabat, the people in charge of the department told us that we should not come here at all.
- And?
- Did we go to a private clinic?
- How much did it cost you?
- 9000 DH for a session plus 900 DH for the scanner, he needed 3 or 4 sessions.
- So in total?
- around 3 million [DH cents].
- And for MRI,
- We were given an appointment for two months from now but we did it in private the same day. We gave him a 500 DH injection.
(…)
- When she found out she was sick, did she have the RAMed card?
- Yes, she already had it.
- So thank God.
- Yes, of course, you know the people who don't have RAMed in Oujda do the same treatments and they pay 600 DH per session; some have to do 30 sessions.
- 600 DH the session at the clinic?
- No 600 DH at the public hospital but in a clinic it costs 1500 DH.
(…)
- So at first you paid for the MRI,
- Yes 300 DH.
- And the analyses? How much is it?
- The biopsy at 500 DH and the first analyses at 300 DH.
- So we loaned you the money for the MRI,
- Yes... 3000 DH
- And to get here? Transportation costs?
- Someone else loaned us the money.
- How many kilometers is that?
- 300 kms.
- How long does it take?
- Three hours by car and five hours by bus.
- And by train?
- The train is too expensive.
- How much does a round trip cost?
- She must always be accompanied because of her health condition.
- Are you the one who always comes with her?
- Yes, it's still me and I have to leave my little girl in Oujda.
- This time who came with her?
- This time there is his sister and me.
- How much did it cost you?
- It is 100 DH the place in bus, that is to say 600 DH for a round trip.
- Were you asked for money (bribery) to get the RAMed card?
- Not at all.
(…)
- Has your budget been affected by the disease?
- Yes, a lot, when we want to make purchases we give up because we prefer to keep the money for the expenses of the illness.
- And morally?
- It has changed our lives.
- When you arrive in Fez at the bus station, how do you get to the hospital?
- By cab (20 DH) and also a cab when we want to go from our home to Oujda to the bus station.
- What about fatigue?
- Yes, a lot especially since she is sick. » **
This case is quite long. The therapeutic itinerary began with radiotherapy, which was not available in Oujda, where the patient lived, so she moved to Fez and then to Rabat, in order not to have to leave the public system where she benefited from RAMed coverage of her care. The patient was finally treated in Fez, at the Oncology Center of the University Hospital. She therefore travels from Oujda to Fez for her radiotherapy sessions, covering more than 300 kilometers. This trip is the consequence of a deficiency, since radiotherapy should be available in Oujda. The cost of transport and accommodation is doubled, since the patient is accompanied by her daughter. It should also be noted that the MRI was performed in the private system, in order to avoid the two-month waiting period indicated to the patient. This was due to the large number of people who needed to undergo this examination and the lack of available machines. However, the question of delays does not only concern the examinations. It can be a more global issue for the entire medical care, as shown in the case below. The patient was sent by a clinic to the University Hospital of Fez after it diagnosed a brain cancer requiring surgery that the patient could not handle. He therefore turned to the public system but had to wait several months before he could be operated on. When he was discharged, a CT scan was required, which had to be done in a clinic, again because of the length of the waiting time:
"Who gave him this appointment?
- University Hospital. It was very far away as an appointment, that's the problem. The appointments are very far away.
- Patients cannot bear to wait for these long periods.
- Yes, so when he was admitted to the hospital, he had surgery last November. He was here for 15 days. When he was discharged, he was asked to have a CT scan, we were given a very distant appointment, so we did it at the clinic. » ††
This situation is reflected in all the interviews we conducted. The long waiting times are a direct consequence of the disproportion between the number of people being cared for and the resources available. In general, we found that all patients, at one time or another, had to leave the medical pathway, either for procedures that were covered but unavailable, or for expenses that were not covered, such as medication (other than those provided as part of hospital care) or transportation to get from their home to the hospital facility. At this point, the patient and family are left to fend for themselves, i.e., to take care of the step that cannot be accomplished within the medical pathway. As the interviews show, these situations are painful. First of all, because they involve choosing to pay not to wait or to pay for access to medication. The patient and his or her family are then forced to make a trade-off between the stress felt, the pain or the risk of loss of life chances, on the one hand, and the expenses required for other essential household needs, on the other. This often results in the use of assistance from close family members (children, parents, siblings) and sometimes more distant ones (cousins). However, these auxiliary resources can only be called upon on an ad hoc basis. As for arbitration, when it is negative, i.e. when the patient cannot make a detour through the private sector in order to benefit from examinations or care not available in the public sector, it implies a risk that can be significant for him or her, as one nurse explains:
"If the patient is developing complications, the examinations allow us to know it, but if we have to wait three months to have the appointment, then carry out the examinations, wait months for a specialized opinion, during this time the pathology evolves and we find ourselves with situations where, because of this delay, complications appear with irreversible consequences. Nothing can be done. We watch helplessly as the patient's condition deteriorates because he is poor. What are you going to do? » ‡‡
3.2. The problem of transport
The problem of transportation appears to be considerable, as patients must, in most cases, travel to the cancer center. There are a dozen public centers in a territory comprising 62 provinces and 12 regions, but there are not as many centers as regions. Rabat (the capital) has 3 structures dedicated to oncology. There are 9 for the rest of the territory. Regardless of whether this is sufficient, the relatively small number of oncology facilities indicates that some of their patients have to travel to receive care. It should be added that, if certain facilities are deficient, patients have to travel to another oncology center than the one to which they belong, and therefore generally to a more distant center. We have thus noted displacements from Oujda to Rabat, Fez and Meknes and displacements from Meknes to Fez. Distance has direct effects on the duration and cost of travel; these effects are all the more important because they are often accompanied by a family member. The two interviews below describe these difficulties:
"What do you use for transportation to get to the cancer center?
- A bus at 40 DH one way.
- How long does the trip take?
- 3 hours.
- Do you go alone or are you accompanied?
- My husband always accompanies me.
- How much does it cost you to go there and back?
- 200 DH approximately, 40 DH multiplied by 4, that is to say 160 DH, but the remainder is for the cabs. In any case, when you bring back a blue ticket [a 200 DH ticket], you get it at the end of the day.
- Since the beginning of your illness, how many times have you traveled for treatment?
- I would not know how to answer you, at the beginning I stayed quite often in Meknes, now I move almost every two or three weeks. » §§
"Since 5 o'clock in the morning, I am awake, I made the dawn prayer and I came to Meknes from Khenifra. I would have liked to have these treatments in Khenifra without moving, just walking and coming back, but unfortunately I have transportation costs in addition... Once I finish, I return to Khenifra the same day. It costs me 110 DH to make a round trip the same day, not to mention the cabs for 20 DH, in Meknes, plus 14 DH of cab in Khénifra, without forgetting the food. For example, I haven't eaten yet, plus I have to eat light, diet, it's even more expensive! (...) It's not only the fatigue on the physical level, because I'm waiting for the moment when I go home myself, but especially the fatigue of asking your relatives for money that weighs heavily on my conscience and affects my dignity. » ***
As can be seen, the problem of transport does not follow on from Thaddeus and Maine's work on the three delays [24], the second delay being that for going from the patient's home to the place of care. In fact, transport is considered in relation to its duration and the urgency of the need for it. Thus, much of the literature on this issue, beginning with Thaddeus and Maine's article, focuses on access to care for childbirth, i.e., the accessibility of care in the event of an emergency. It is not the emergency that prevails in the case of cancer patients. On the other hand, transportation difficulties can lead to irregularities in access to care, and these can be cumulative. In interviews with both health care staff and patients, it appeared that a chemotherapy session could be postponed for three weeks (until the next scheduled session) because the patient could not find or pay for transportation or because the road was not passable (this situation only occurs in winter when there is snow). In some cases, however, the period without care may be longer, when the patient could not find or pay for transportation (first postponement) and then could not leave home because of snow (second postponement). These situations do not appear to be the most numerous, but they do exist. They show that what is at stake in the lack of transport, in the case we are interested in, is not the immediate risk but the long-term risk, the stress and discomfort of the patients as well as their impoverishment. This, however, is not the result of inadequate hospital or RAMed services, but is the result of the lack of a stable, efficient, and robust ambulance and medical transport system in Morocco, and the lack of a system for paying for transport costs. There is therefore not only a problem of access to care, but also a specific problem of access to ambulances [25]. Patients are thus required to pay for their own travel from their homes to hospitals and oncology centers.
† The continuation of the remedies necessary for the treatment of the disease, when they differ from the care pathway provided by the RAMed.
‡ 1 Dirham (DH) is equivalent to a little more or less than 0.09 Euros.
§ Daughter of a 52-year-old patient, Meknes Oncology Center, May 2018.
** Accompanying person (daughter of the patient), 20 years old, CHU of Fez.
†† Accompanying person (daughter of the patient), CHU of Fez.
‡‡ Nurse, CHU of Fez.
§§ Woman, 47 years old, Oncology Center of Meknes.
*** Woman, 39 years old, Oncology Center of Meknes.