The pandemic has produced additional challenges for surgery options within my country and access to expert care of specialist outside of my country due to border and travel closures. Telehealth has been a great accessible answer to consultations and appointments but hospital treatments are limited.
There has been difficulty in making an appointment with the doctor, and accessibility has become a huge challenge because of the lockdown. Due to the sudden lockdown, there was rush at the pharmacy and hence led to severe challenges in obtaining medicines and inhalers. Also, consultation over video conference became a huge challenge.
My routine hospital visitation was cancelled, which when I had an ingrown nail I couldn't get the orthopedic team to trim, so it got infected, which then resulted in me having an emergency surgery to remove the whole big toenail. It was traumatic. Some of my routine medications weren't available because pharmaceutical companies couldn't bring in their products.
I live in Kalimantan, Indonesia but I did my chemotheraphy and targeted theraphy in Sarawak, Malaysia. My doctor said that I had four cycles of chemotherapy and 18 cycles of targeted therapy. Suddenly the Malaysian Government made the announcement to lock down its country. So I could finish three cycles of chemotherapy in Malaysia during lockdown because of the Covid-19 pandemic. Then, I had to continue my next chemotherapy in Indonesia. My next one should be on 8 April 2020 and that time was my last chemotheraphy and four cycles of eighteen targeted therapies (herceptin). It has three infusions that I used for chemotherapy that were docetaxel, carboplatin and herceptin. I visited the general surgeon doctor in my small city because there was no oncologist in my home town. If I wanted to visit an oncologist I had to go to Jakarta and this was high risk for me because the effect of chemotherapy on my immune and my body were still happening to me. So I decided to have treatment in Pontianak with the general surgeon. I tried to call the oncologist in Malaysia and he answered my call and he gave some suggestions to continue the same medicines. I tried to order from the private hospital in Pontianak and one of my medicines was not available. So I asked my social media of Her2 positive group in Indonesia and the leader helped me to order herceptin in Jakarta. I ordered three weeks before 8 April 2020 and it was difficult to find, and then I made the decision to have chemotherapy without herceptin. When I waited for three weeks this medicine was still difficult to find. So my targeted therapy was late by three weeks. I ordered herceptin from the pharmacy in Jakarta and they sent it with cargo from Jakarta to Pontianak, and then I had to pick it up by myself from the airport. At last I can get herceptin by ordering directly from the pharmacy in Jakarta and I can continue targeted therapy on 2 May 2020. Because of covid-19 I missed the immune targeted therapy for three weeks due to the transportation and lack of medicine in my home town.
Prior to the pandemic, endometriosis in my country almost didn't exist. Things got worse because suddenly no other health problem mattered except covid 19. When I managed to get to the hospital I was treated like an outcast. I was asked to sit at the door of the consulting room to speak to the doctor. I felt very uncomfortable because there was no privacy. A lot of surgeries were cancelled during this period and sufferers going through pain had to endure it, thus affecting their mental health. Some of them were suicidal because of lack of early diagnosis, management etc
Yes, it has been affected, because I was unable to see my endocrinologist or the other specialists who were treating me. They telephoned me, and I had my latest tests and everything was fine, but I am now no longer going to have private healthcare because my employment circumstances have also been affected, so I will change to public healthcare.
I am a student who lived in an area that has been challenged with the issue of medical infrastructure and even health personnel. With this Covid period, due to the effort to enforcing the social distancing protocol, patients who visits the clinic not as early as possible are told to go and come back the next day. This sometimes put you into greater suffering while waiting for the next day to come.
The treatment for my disease (medullary thyroid cancer) is not available from the national public health service, so I had to obtain it privately. However, this was not possible because of changes taking place within the pharmaceutical company, which was giving priority to Covid-19 and sold the rights to the medication to another pharmaceutical company, leading to a shortage of the medication and no possibility of accessing the previously existing support programmes for patients. It was also impossible to import the medication because of changing customs policies in the country. This means that I have not received adequate treatment for my disease since March 2020 and I am uncertain as to when or how I will obtain it.
Yes, COVID 19 has really widened the already existing health disparities, especially for people living with either one or more NCDs. WIth stringent lockdown and cessation of healthcare services to combat the challenges of COVID, a lot of health system burden came upon people who required access to routine care for cancer, diabetes, hypertension, and other comorbid conditions. There were also barriers in procuring medications resulting in many people landing in complications due to rationing of their doses or being unable to reach out to their medical services.
Initially it was difficult accessing medication. Due to fighting Covid, NCDs are ignored. What's more ignored is the mental health aspect. Our non-profit started India's first app based diabetes and mental health helpline run by trained PLWNCDs with lived experience (more info: https://www.bluecircle.foundation/buddies)
COVID 19 has shone a light on the weaknesses within our healthcare system. Patients with NCDs are vulnerable due to changes in healthcare provision and facilities. Moreover there is no consideration of the mental health of patients due to the constant fear and stress of COVID.
We were afraid to see the doctor at the hospital in the first months. The recommendation was that we should only go if we had a specific reason. As for medications, the expiration date of prescriptions was extended, which facilitated access to medications. The service is returning to normal, but we still have difficulty in vacancies for specialties such as psychology and others by the public health system.
I have private healthcare. All my face-to-face appointments have been cancelled, and appointments are by telephone. I had to postpone an operation (cataract). Blood tests are carried out at home and the results are sent to the doctors by Internet. I order my medication over the telephone and it is sent to my house for about the price of a ticket .
I have been able to maintain access to my monthly immunoglobulin infusions, but various safety and social distancing protocols have been put into place. Mostly minor inconveniences, my doctors have been attentive and have a safe set-up in place - and I am privileged enough to be able to to avoid public transportation and anything else that makes the process less safe for someone with a severe immune disorder. Again - mostly minor inconveniences, but I have also had to cancel breast cancer screening and other routine cancer survivorship services, given limited access to non-essential services. COVID-19 is also in high demand and limited, but that is not exclusive to PLWNCDs (more so the failings of the US federal response and public health care system). Clinic visits (and the lockdown in general) have resulted in higher anxiety across the board, which I should be pushing more to self-advocate or manage, although it has gotten easier as we've settled into routines around COVID.
Accessibility of healthcare has been compromised because of movement restrictions due to the COVID-19 lockdown. I have to make an appointment in order to visit a clinic that I would have otherwise just walked into before the pandemic. Refilling of prescriptions is now taking much longer than before. It now takes as much as two weeks for my chronic medication to be delivered to me.
I have had difficulties accessing test strips and in some instances insulin, as it is said to be in short supply. The prices of both test strips and insulin have gone up slightly since the country went into lockdown. Our public hospitals do not have nursing staff, which means that people who are in need of help are not getting the help that they need in time.
Transport was shut down for about 4 months, so going to hospital and buying medications was a challenge. It affected our ability to meet and support people living with diabetes. Especially since only 2% of the country population has access to Internet and smart phones, so online support and communications became challenging. Anxiety about being able to afford medicines without work. Anxiety about financial future.
The first COVID-19 case was confirmed a week after I visited the Diabetes Clinic. Since then in my Diabetes Clinic, follow-up continued through phone calls. You are only allowed to come to the clinic if you have a special case that needs to be checked/seen by a physician. Even though follow-up continued through phone calls, some people were not communicated with, and I am one of those. So far, there is no problem getting my medication from pharmacies and I am following up my diabetes by calling the physicians I know in person.