Following her HIV diagnosis, Kak Ella had to endure the full brunt of stigma and discrimination when she was unfairly dismissed by her GLC employer due to her HIV status. Her health also worsened as she also suffered advance stage of tuberculosis and other health complications related to HIV infection.
Following many months of intense first-line antiretroviral treatment, her health improved. Her personal triumph in surviving HIV also prompted her to become a HIV and AIDS activist. She was not shy to speak openly about her HIV status in all her public speaking engagements and on many occasions, made media appearances as well.
Guided by her deep passion for the community, Kak Ella finally took the bold step of establishing her own NGO for Muslim Women Living with HIV (Pertubuhan Wahidayah Malaysia), which subsequently operates its own shelter home for women and children who are affected or orphaned by HIV.
However, in 2010, she noticed that her health condition had started to deteriorate at an alarming rate. She was briefly hospitalised for health complications related to HIV infection. Her CD4 cell count was dropping and her HIV viral load was increasing – both were stark indication that her first-line ARV treatment was failing – and that she was in urgent need to change her medication to second-line regime.
Kak Ella was alarmed by this development because second-line ARV regime is not covered by the Malaysian government. The new medication regime prescribed to her is Kaletra, which costs RM900.
With her meagre income as administrator and caretaker of her own shelter home, Kak Ella could not afford the live-saving drug that she desperately needs. She became acutely aware that her critical situation would also spell trouble for the residents at her shelter home who depend on her and the many other HIV+ women who look up to her leadership in Persatuan Wahidayah.
Intervention by MAF’s PAL Scheme was very timely for Kak Ella. Her application was approved by the Medicine Review Panel in 2010 and since then, Kak Ella is able to go back to doing things that she enjoys the most – connecting with the community and saving lives of many other PLHIV peers through her activism. The second-line ARV treatment that she received had successfully reversed the negative complication from HIV infection that can no longer be contained by the first-line treatment.