ASCAT 2023 | Addressing access to pain relief for patients with SCD
Andrew Campbell, MD, Children’s National Medical Center, George Washington University School of Medicine and Health Sciences, Washington, DC, discusses strategies to overcome the barriers to delivering pain relief to sickle cell disease (SCD) patients in rural and low- to middle-income countries. These obstacles include limited access to healthcare providers, restricted availability of pain medications, gaps in SCD knowledge of healthcare providers, and financial constraints. This interview was recorded at the 18th Annual Scientific Conference on Sickle Cell and Thalassemia (ASCAT) 2023, held in London, UK.
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Transcript (edited for clarity)
Pain is assessed subjectively primarily, where the patient talks about their pain to the health care provider. The problem is that, how pain is discussed in different regions of the world, a lot of it has to do with what access do they have to pain? Also what access to pain medications, for example, or treatments for pain they have, and that can differ from country to country. Also, different health care utilization practices are different from one continent or country to another...
Pain is assessed subjectively primarily, where the patient talks about their pain to the health care provider. The problem is that, how pain is discussed in different regions of the world, a lot of it has to do with what access do they have to pain? Also what access to pain medications, for example, or treatments for pain they have, and that can differ from country to country. Also, different health care utilization practices are different from one continent or country to another. So for example, some patients like in the US, if they’re in pain, a lot of times they’ll complain to us that they’re in pain after they’ve used stronger pain meds, here in the United States. Whereas in a place like Ghana, for example, or Nigeria, they might come to the clinic sooner because they may not have access to stronger pain meds, for example. So there’s probably more visits potentially to the clinic for pain management in say Ghana versus the United States.
Also, how far they live from a place that can actually see them for their condition. So in rural areas, for example, in the United States as well, but mostly in sub-Saharan Africa, they may have to travel for more than an hour or two to actually find a location to manage their pain. So in places like in low- and middle-income countries, they may have to go right to a traditional medicine center, for example, and get traditional medicine because that might be closer to them and have more access, and it actually might be cheaper than a conventional medicine.
And then the third point is the number of healthcare providers. You may not have a sickle cell trained healthcare provider or a healthcare provider who’s familiar with sickle cell disease in different regions around the world, because there’s not enough healthcare providers in the workforce in different countries. So there’s a lot of implications in terms of when patients say they’re in pain, it depends on what resources they have to manage their pain. Do they have access to a clinic or hospital to treat their pain? And then, are there healthcare providers that can address it?
And also the last thing is finance. A lot of the families in low- and low-middle income countries may not have the resources to also pay for pain medications, and even in parts of developed countries in Europe and also the United States, there are also populations that also fit that where they don’t have the resources to pay for it.
Well, first of all, actually having access to a clinic that is knowledgeable about sickle cell disease and has some experience in treating patients with sickle cell disease. So first of all, you know, having a clinic or identifying patients early, like providing newborn screening so that the patient can be educated on sickle cell disease and they can identify what pain and a painful crisis or event is. So number one is it’s just patient education. So identifying the patients and educating the patients earlier.
Two, giving patients the resources that are available in their region, so that if they go into pain crisis they can have their own kind of individualized pain plan that is appropriate for them in their region. So I think education is very important, establishing education for the patient and the family in terms of how to manage pain.
Obviously, having access to more disease modifying therapies is another way- hydroxyurea is the most well known of these. Increasing access to Hydroxyurea is a game changer in many of our low- and middle-income countries and what that does is it cuts down on the number of painful episodes, for example, that a lot of our sickle cell patients suffer from, and that’s been already shown in Nigeria and also in Congo, for example, that Hydroxyurea can make a significant difference in low- to middle-income countries, therefore decreasing the pain burden in that population, obviously.
And then the other is having more options, including clinical trials in sub-Saharan Africa and in lower resource countries, so that some of some of these clinical trials can be available to patients in low- to middle-income countries, so getting them involved for that. And I think just also at the policy level, just including the local governments and community-based organizations locally around the world to really advocate, especially in low- to middle-income countries, for the government to pay for some of the services and the medications that sickle cell disease patients will need all their life.
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