This article is part of the special edition A person-centered approach to multiple myeloma.
According to Teresa Regueiro, president of the Spanish Community of Patients with Multiple Myeloma (CEMMP), it is a priority to close the lack of access to treatment for multiple myeloma, which varies considerably from one autonomous community to another in Spain, and to promote the search for new drugs.
In an interview with EuroEFE, Ms. Regueiro recalls that multiple myeloma, an incurable form of plasma cell cancer, can lead to continuous relapses.
“The challenge is to overcome these relapses with appropriate treatments for each patient”she said.
In Spain there are approximately 13,000 patients with multiple myeloma: they all receive support from the CEMMP, which informs them and provides them with personalized assistance mainly.
To better cope with the physical and mental challenges posed by this disease on a daily basis, it is necessary, among other things, to overcome the “lack of equity in treatment on the national territory”declared Mme Regueiro.
“Even within the same autonomous community, hospitals in each province can also choose [les médicaments à utiliser], resulting in a total lack of equity in treatment. Salamanca is a global benchmark, but nearby Valladolid does not reach the same level”she said.
Ms. Regueiro, diagnosed with multiple myeloma nearly 14 years ago, pointed out that despite huge advances in drug development, public funding and regional disparities remain a problem.
“When an agreement is reached [avec le ministère de la Santé] for reimbursement funding we find, as with many other diseases, that it is not approved in all the autonomous communities. On the other hand, each autonomous community can choose whether or not to buy this or that medicine. There is an alarming disparity between the situations”she warned.
As for the feasibility for patients to seek treatment in some more advanced Autonomous Communities, she replied:
“It is not possible to get treatment in another community; […] you would have to register and go through a series of impossible procedures. I don’t think it’s doable […] nor fair to patients. »
Hope lies in clinical trials
The President of the CEMMP, however, stressed the importance of continuing clinical trials with new drugs, as patients with multiple myeloma can develop resistance to certain drugs.
“We should be very grateful to have clinical trials in Spain. Many patients would die if they did not exist. In addition to promoting the advancement of research and treatments, they also promote providing other options for sick people who have exhausted all existing lines of treatment”she pointed out.
Since 2015, several new lines of treatment have been approved in Spain, which have significantly improved the quality of life of patients with multiple myeloma.
“It is important to live longer, of course, but in a qualitative way. If you prolong your life, but you just sit in a chair, you don’t really have any quality [de vie] »she added.
The lengthening of the life expectancy of patients with multiple myeloma allows us to hope that this pathology will become “chronicle”a concept that Ms. Regueiro does not consider appropriate.
“Personally, I don’t like to talk about chronicity because, for a patient, chronicity is understood as a ‘lifelong’ phenomenon. In our case, it is impossible to predict the lifespan or the effectiveness of a specific treatment”she points out.
Disease “can become chronic, yes, but you have to understand it in the sense that it will come back or can come back. You may have to undergo aggressive treatment again”she warns.
When it comes to treatments, she says there has been a significant change thanks to new drugs with manageable side effects.
“We have moved from pure, old-fashioned chemotherapy to new agents, including monoclonal antibodies”she said, adding that so far the side effects (of the new drugs) have been relatively manageable.
“In addition, we are entering the era of immunotherapy, the side effects of which may be different and will have to be assessed. Until recently, we combined a series of new drugs and the result was not bad. Many patients are doing well with these innovative drugs.”she added.
The emotional weight
Regarding the daily life of a patient, she explains that in the absence of pain or any other comorbidity, a “normal day” looks like anyone else’s.
“If you regain your quality of life, you will feel as good as the others. You will always have something, but, in general, your “day” will be like that of everyone else”she said.
In this regard, Ms. Regueiro points out that many patients may even consider returning to work.
“You can regain your quality of life, and I would even dare to say that many can resume their professional life. A certain percentage of patients, especially younger ones, can return to work”she said.
However, patients with multiple myeloma must overcome various obstacles and demonstrate resilience on a daily basis, as is the case with any disease.
“While the goal is to provide patients with the best possible quality of life, myeloma carries a significant emotional burden”she explains.
“When you have cancer, you are not told from day one that you have an incurable cancer and that you will have relapses. They tell you otherwise. It is impossible to avoid the emotional weight of knowing that you are fine, but that you could relapse at any time. It’s something very difficult to bear mentally.”she concludes.
2023-04-27 12:18:57
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