WEBVTT Kind: captions Language: en 00:00:17.120 --> 00:00:19.687 My name is Katongole Wilson. 00:00:19.687 --> 00:00:24.159 I live in Kalungu District in Kyamulibwa Subcounty. 00:00:24.159 --> 00:00:33.196 I was told that I was born without a disability, that I developed it later as I was growing up. 00:00:33.196 --> 00:00:39.551 My legs are weak as I walk from the ground with my right hand. 00:00:43.802 --> 00:00:46.765 My name is Nabuma Resty. 00:00:46.765 --> 00:00:51.624 I live in Natita Soweto. I have 63 years. 00:00:51.624 --> 00:01:02.589 I am with my niece Nassazi, a daughter to my late brother whose wife also died. 00:01:03.424 --> 00:01:06.311 My name is John Bosco Ssemanda. 00:01:06.311 --> 00:01:09.224 I work with TASO Masaka. 00:01:09.224 --> 00:01:12.816 I'm the clinical services and linkages officer. 00:01:15.001 --> 00:01:20.669 The problem that I faced is that I got infected with HIV. 00:01:21.459 --> 00:01:28.053 Additionally to that, I stay alone as I don’t have a personal assistant 00:01:28.053 --> 00:01:35.472 to help me most especially when I am fetching water and buying food. 00:01:35.472 --> 00:01:42.575 I can pick up my ARVs from the hospital because it's free from MRC, 00:01:42.575 --> 00:01:51.440 but my biggest challenge is with food, as it's very hard for me to get enough of it 00:01:51.440 --> 00:02:02.967 because I repair radios and spoilt phones but my income is too small to cover all my daily expenses. 00:02:05.338 --> 00:02:16.172 I swallow medicine but I usually run short of food and the type of drugs I take usually hurt my digestive system. 00:02:16.698 --> 00:02:21.959 So, when you look at people with HIV, people who are infected with TB, 00:02:21.959 --> 00:02:28.509 first of all, they need to have a balanced diet and here when we talk about a balanced diet, we are looking at 00:02:28.509 --> 00:02:35.018 those basic food values, where we have those energy-giving foods like carbohydrates, 00:02:35.018 --> 00:02:42.663 the proteins, vitamins, and minerals, not forgetting water. 00:02:42.663 --> 00:02:53.360 And so we need to have that for those who are on treatment for HIV, TB, or who are co-infected with both. 00:02:57.888 --> 00:03:05.732 Nasazi got infected with HIV when she was young. She's also suffering from TB. 00:03:05.732 --> 00:03:13.237 Her life is a bit disturbing because in her menstruation periods, she suffers from mental disorder. 00:03:14.640 --> 00:03:16.629 Nasazi became pregnant. 00:03:16.629 --> 00:03:22.805 She used to receive her antenatal care from Bukulula Hospital, together with her TB screening tests. 00:03:22.942 --> 00:03:28.870 After receiving her first TB dose, she used to adhere to her drugs but she became reluctant, 00:03:28.870 --> 00:03:35.142 as she was not constantly being reminded to take them, thus she didn’t complete her first dose. 00:03:35.142 --> 00:03:43.317 She got her second dose, however, she received her third dose at the same period when her fetus had matured 00:03:43.317 --> 00:03:50.432 and yet, she didn’t have appetite for food and she didn’t eat enough but she constantly took her drugs. 00:03:51.201 --> 00:03:59.525 The major benefit of taking and having a nutritious diet is mainly to build the immunity, 00:03:59.525 --> 00:04:08.513 because the moment we have a very good nutritional status, the immunity of our client would be built, 00:04:08.513 --> 00:04:17.097 and in that case the fighting of different diseases would be paramount. 00:04:19.844 --> 00:04:27.618 Nasazi lost her unborn baby at the hospital and that’s because she didn’t have enough nutritious food. 00:04:27.953 --> 00:04:31.428 I kindly plead for the nurses to get Nasazi food 00:04:31.428 --> 00:04:35.469 so that she can keep up with adhering to her drugs promptly. 00:04:39.282 --> 00:04:47.697 Some time back as an organization, we were providing food –actually, way back – we were providing food for people with HIV. 00:04:47.697 --> 00:04:55.145 We had different projects where we would provide food to these clients and it was something good. 00:04:55.145 --> 00:05:00.739 But you see, providing food for someone every day for life is also not that easy. 00:05:00.739 --> 00:05:10.419 When we started providing ARVs and we realized the general health of our clients was improving they were no longer bedridden, 00:05:10.419 --> 00:05:13.960 then those some of those programs ended. 00:05:16.646 --> 00:05:24.556 If Nassazi could get enough nutritious food and drinks, she would be able to complete her dose for TB and get cured. 00:05:24.556 --> 00:05:33.901 If only she could get cured of one disease like TB, she could get strength to walk to the health facility to get her monthly ARVs. 00:05:33.901 --> 00:05:43.082 The biggest challenge we face is that Nassazi is not getting enough food to support her immunity. 00:05:43.801 --> 00:05:50.412 And the way it comes to persons with disability, the challenges is even, 00:05:50.412 --> 00:05:56.132 the burden is even much higher because some of them are not able to support themselves. 00:05:56.132 --> 00:06:03.664 So if someone is supporting them on their day-to-day needs, then they may not be able to support with the medicine. 00:06:03.664 --> 00:06:15.926 So, if a program like MADIPHA comes up in a way they can support them then it is a very good deal that is welcome, 00:06:15.926 --> 00:06:21.041 because it is also disappointing for us, you have to diagnose someone with a problem. 00:06:21.041 --> 00:06:26.629 You have prescribed each and everything, but this person is not able to get to the medicine, 00:06:26.629 --> 00:06:33.160 the following day the same person will come back with a similar or a more complicated problem. 00:06:36.547 --> 00:06:43.058 But in most cases, we also have another problem that we use ARVs 00:06:43.058 --> 00:06:50.769 but still get infected with other diseases like typhoid, TB or malaria. 00:06:50.769 --> 00:06:58.726 And treatment costs are so high and for my case I don’t have a personal assistant 00:06:58.726 --> 00:07:08.092 yet I just don’t have any way I can get money to cover up my hospital bills, 00:07:08.092 --> 00:07:16.500 undergoing scans and transport costs are too high and so, we face a lot of challenges. 00:07:16.760 --> 00:07:23.742 So for drugs, for those other opportunistic infection, if someone is having HIV, 00:07:23.742 --> 00:07:30.221 and is maybe now diagnosed with hypertension, the funder is no longer giving us money 00:07:30.221 --> 00:07:38.562 to buy drugs for hypertension or diabetes or any other ailment like asthma, 00:07:38.562 --> 00:07:43.151 those or urinary tract infection, sexually transmitted diseases. 00:07:43.151 --> 00:07:46.198 So that is where we are having a challenge. 00:07:48.794 --> 00:07:58.456 In these challenging critical situations, I kindly request for assistance in terms of food and medicine 00:07:58.456 --> 00:08:03.608 because if I get through these most challenging situations, 00:08:03.608 --> 00:08:07.477 I can cater for myself in the future. 00:08:08.521 --> 00:08:16.754 Our request to other partners like MADIPHA, to government, 00:08:16.754 --> 00:08:25.570 is to come in and continue supporting Ugandans, because whether someone is having any disability, 00:08:25.570 --> 00:08:35.226 is HIV positive or is having any other chronic infection it is the duty of the government to support. 00:08:35.226 --> 00:08:45.303 So we are calling upon government to continue supporting, and the other partners who can come and rescue our clients.