Deaths, irreversible health damages, delayed treatments and obstacles to accessing medicine are part of the landscape.
A voice of global help from patients and organizations from Latin American countries has been heard since April of this year when World Hemophilia Day was commemorated, given the difficulties and obstacles they face when it comes to receiving care and especially treatments.
Access to medicine is one of the great challenges facing the World Federation of Hemophilia in caring for patients with the condition. This was recognized by the president of the Federation, César Garrido, in an interview published on March 1 on the Hemohermanos blog. Read it here: https://fhlusa.org/entrevista-con-el- Presidente-de-la-fmh/
In the same dialogue, Garrido also assured that Southeast Asia and Africa, where only 16% of patients are diagnosed, are the regions that are most in need. In the case of Latin America, the leader affirms that in the region “there is a more mature leadership, more prepared treating doctors and a diagnosis in almost all countries.”
Motivated by voices of protest, Hemohermanos toured various territories in the region and this is the panorama that was found:
Figures that are alarming. 91 hemophiliac patients died in Venezuela due to lack of treatment: President of the AVH
“As if we were at war or in a natural catastrophe”, this is how the president of the Venezuelan Association for Hemophilia, Luis Rojas, describes the situation in his country. He affirms that 91 hemophiliac patients have died in the last 5 years due to lack of treatment.
According to the leader, since 2016 the Venezuelan State does not buy the respective medicines. “In 2019 only 1.4% of the need for the entire country was acquired. We also don’t have reagents for new diagnoses ”, he laments.
As if that were not enough, the humanitarian crisis that Venezuela is going through and the Covid-19 pandemic exacerbated the situation of the 5,170 people diagnosed with hemophilia or other quadrilateral diseases in Venezuela.
“We have survived thanks to humanitarian aid and donations from the World Federation of Hemophilia, which are only available for emergencies or on demand and at this moment the aid has ended,” says the president.
A scene that repeats itself
According to other figures provided by the Association, the lack of medicine means that 70% of patients with hemophilia in the South American country have irreversible damage to their joints.
“We are pressing hard for them to buy the factor, we still do not see it anywhere,” claims the president of the Association, who also assures that not even two precautionary measures before the Inter-American Commission on Human Rights have been effective.
Luis Rojas comments that due to the pandemic, the laboratories are not producing factor as before and, to make matters worse, when medicines arrive in the country, they do not have how to transport them.
There is more. According to the leader, they have taken a step back of at least 30 years in the treatment of Hemophilia, “cryoprecipitates and plasma are being used. It is as obsolete as saying that we are going to put a coal train in the city ”.
29 children in Jalisco, with obstacles to access medicines
12 hours of travel, six to come and six to return, is the time that Raúl and his son need to get from La Sierra to the General Hospital of the West, in Jalisco, and return home. That routine, for years, they do once a month to access treatment for hemophilia.
However, starting in February this year, when they arrived at the pharmacy they found the news that they were only going to continue receiving treatment for one week, which meant going from one monthly visit to the hospital to four or five.
Just like Raúl’s son, there are 28 other children from the state of Jalisco who are on prophylaxis at the Hospital and who are in the same situation. According to information provided by the Unit and Development Brothers with Hemophilia of Jalisco, the families of these children live from day to day of informal jobs and going to the hospital implies that they stop receiving income.
According to the director of the Unit, Carlos Gaitán, the complaint was made before the hospital authorities, who asked that the delivery of medicines continue to be done once a month or as a comprehensive service, it be taken as a delivery to the patients home.
For Gaitán, in addition to families ceasing to receive income, the risks of contracting Covid-19 are added, as patients have to travel more times on public transport and in the hospital they treat patients with the virus. “The risk of contagion and family finances are a worry for an administrative decision by the hospital,” he said.
“They did not pay attention to us, they did not listen to us, they did not analyze the problem and for that reason we decided to file the complaint with the State Human Rights Commission. The hospital authorities say they do not have more information, that they simply gave them the order from the Ministry of Health and the Ministry of Health of Jalisco, “he said.
A local problem that is reproduced on a national scale
Carlos Gaitán, who between 2009 and 2015 served as president of the Federation of Hemophilia of the Republic of Mexica (FHRM), argues that the problem in Jalisco is reproduced on a national scale because in the whole country there is no model of care for people with coagulopathies, “so almost each hospital decides how it provides medical care.”
The former president of the FHRM explained that access to treatment and therapies in Mexico occurs in several ways: “on the one hand there are those who have the right to social security because they have a formal job and on the other, those who have an informal job that we call open population and that depend directly on the ministries of Health ”.
He also comments that even some hospitals have interrupted the delivery of treatments. He attributes the situation to the fact that federal funds have not been reaching the hospitals since last year and that local governments, without having enough money, pay for the medicines.
Although Gaitán acknowledges that hospital care is “comprehensive and very good,” there is still progress to be made in home treatment. “In social security, since last year, home delivery of recombinant factor 8 (for hemophilia A) has been generalized to most hospitals. However, the same did not happen with factor 9 (for hemophilia B) and much less with anti-inhibitor therapies, ”he said.
The leader concluded that the response of the Hospital General de Occidente is to reconcile the complaint. “They verbally told us that the proposal is to regularize the monthly deliveries starting in June, but we have not yet reached a formal agreement, which must also be through the State Human Rights Commission.”
Patients affirm that changes in the administration of the Blood Bank “are putting their health at risk”
Javier Rivas, hemophiliac patient and former president of the Nicaraguan Hemophilia Association (ANH), assures that for more than 30 years hemophilia patients in his country had been treated at the blood bank led by the Nicaraguan Red Cross. According to Rivas, everything “worked well,” since they had access to hematologists, home treatment, and they always received timely care.
By 2017, according to the Nicaraguan, the administration of the blood bank passed into the hands of the Ministry of Public Health, an entity that continued with the same methodology that had been given. However, he regrets that for 2021 new guidelines put at risk the health of people in the Central American country.
According to the former president of the ANH, now they will not be allowed to access home treatment and to receive care they will have to approach the nearest health units, “which would be appropriate, but these health units do not have the conditions for appropriate care ”, He specified.
The patient reports that as a consequence of his illness, he suffers joint damage, a situation that becomes predominant in patients with hemophilia who do not receive timely treatment.
“With the new guidelines we have seen cases of patients who have come to health centers and have even had to wait up to 10 hours to be transfused. There is no factor, ”says Javier. He adds that the medicines required by hemophilia patients are not bought in his country. “These only come through donations (which are few and not very frequent) from the World Federation or by friendly organizations from other countries.”
What do the leaders of the Association say?
According to Rivas, the Association does not support them with the demands for the different options that can provide a solution for this issue. “We requested a meeting with the board of directors to find out their position and we found that they are in favor of the measures that are being taken.”
He also relates that they have requested accompaniment from the Human Rights Organization to speak with the Vice Minister of Health, to which they have received no response.
In this regard, Engels Reyes, current president of the ANH, assured that the country is in a process of adaptation to a new Family and Community Care Model. He explained that it seeks to prevent patients from having to travel to the Nicaraguan capital, which could mean 2 to 18 hours of bleeding without attention.
The leader explained that now, with the new care model, if patients are registered at their nearest health center, they will be able to have treatment available from their locality, which reduces their bleeding time and allows health personnel be able to know the patient, record their bleeding events in a clinical record and be able to refer them to a higher level of care if required.
“It is important to emphasize that the treatment of hemophilia is not limited only to the application of a blood derivative, rather it requires a multidisciplinary team to help them address their particular needs to restore their health in an optimal way,” he added.
He also clarified that the Association has nothing to do with the treatment decisions of the Ministry of Health and that it has a team of medical professionals that dialogues with the authorities to provide suggestions that benefit people with hemophilia.
Reyes also expressed his concern at the refusal of some people who, according to him, promote misinformation with the community, instead of responsibly supporting a good approach to the health system, and emphasized: “our organization is concerned about the high level of self-medication that our hemophilia community suffers with and the lack of knowledge that there is regarding a comprehensive health care. We want to promote greater participation in health care from the most basic levels, such as medical consultation and frequent check-ups”.
Insufficient treatments and uneven care
According to information given by the Uruguayan Hemophilia Association, it is estimated that there are about 300 hemophilia patients in the country, 250 registered. The rest, according to the organization, are not in the figures because they are probably mild cases and are not diagnosed.
In dialogue with the president of the Association, Isabel Sorondo, she acknowledges that there is a significant under-registration of “carriers” because, according to her, their care as patients is still in an incipient stage and they do not work with them before they decide to have children. “Many times the disease is detected once the child is born or even just as the child begins to have symptoms even though we were aware that there is a family history,” she emphasizes.
Regarding treatment, the president assures that in Uruguay almost all children with a severe phenotype are on prophylaxis, with exceptions to altered treatment due to high costs, especially in private health services.
In the case of adults, she points out that less than 40% have access to prophylaxis and 48% of the total population has factor at home.
“The quality of care is different between children and adults, children access prophylaxis although not comprehensive treatment. On the other hand, adults have access to prophylaxis to a very lesser extent and it is often insufficient,” the leader points out.
What they dream
Sorondo affirms that they are working so that the Pereira Rossel Hospital Center is appointed as a pediatric referral center for hemophilia, since there is free and comprehensive care.
In this regard, in a press release, the AHU explained that in 2018 the Law on Health Reference Centers for complex and low-prevalence diseases was enacted. The document states that in 2019 two Reference Centers for Hemophilia and other bleeding disorders were named, one for adults and one for children. “Unfortunately, in 2020 the Ministry of Public Health revoked both centers for issues related to administrative irregularities in their appointment,” promulgates the communication.
On the other hand, to improve the quality of life of patients in the South American country, the leader of the Association ensures that it has sought that all patients have an attack dose at home or in a nearby health service. In addition, more people are expected to access prophylaxis and newer treatments, as the medication available is the one used in the world for almost 40 years. “In Uruguay, progress in terms of treatments is stagnant. No patient has comprehensive care, not even interdisciplinary, “she concluded.
For Isabel Sorondo, the differences at the level of the Uruguayan territory have to do with the fact that “the Uruguayan is macrocentric”, referring to the fact that everything is quite centralized in the capital of the country and the care in remote regions is more complex. For the president, the fact that there are few patients outside the big cities means that there is no accumulation of information and often not even specialists in the field.
Uruguay and patients with hemophilia are not strangers to the global crisis due to Covid-19. According to the president of the Association, people go to less consults because they do not want to go to hospitals, for fear of catching it, adding that now “the priority of the Government and the health authorities have to do with the pandemic and hemophilia went to a very secondary level ”.
More than 380 patients are without prophylaxis drugs
At least 381 hemophiliac patients in the country would be without access to medicines, this was announced by Wilmar Rodríguez, president of the Honduran Hemophilia Society (SHH).
According to the leader, although in Honduras patients have always had the drug, for two months there has been a shortage in hospitals. He attributes the situation to government budget cuts due to the pandemic, which “cannot be the argument because hemophilia is there every day,” he said.
Precisely in April, the month in which World Hemophilia Day is commemorated, the SHH called for the Government to become aware of what is happening. “With the little donation we have been solving the emergencies that have arisen, but it is not a product that we have for prophylaxis.”
The president assures that they have been in talks with the Ministry of Health to seek the best treatment for patients, but they are still waiting for the Government’s responses. “Our fear is that more emergencies will arise and we will not be able to respond,” he concluded.