November 29, 2013
From death sentence to chronic condition: SickKids celebrates 25th anniversary of HIV program
In 1988, there was little a doctor could do for a baby born to an HIV-positive woman. The risk of transmitting the virus from the mother to the infant was between 25 and 40 per cent and in Canada, about one third of babies infected with HIV would die in their first year of life or develop AIDS.
Today, the risk of transmission from mother to baby is virtually zero, thanks to better HIV diagnosis in pregnant women, effective medications and disease management during pregnancy. Not only are babies born uninfected, but mothers are living long and healthy lives alongside their children. In just 25 years, a once-fatal disease can now be prevented.
On Dec. 1st, World AIDS Day, The Hospital for Sick Children (SickKids) celebrates the 25th anniversary of its HIV Comprehensive Care Program. HIV treatment has come a long way since the 1980s and the team at SickKids has seen a revolutionary improvement in the quality of life and prognosis for children with HIV.
“We went from a time where we cared for many very sick and dying children – children we had no treatment options for – to today, where virtually no patient in the program is even hospitalized,” says Dr. Stanley Read, co-founder of the HIV Comprehensive Care Program at SickKids. “HIV is no longer a death sentence. As long as our patients take their medications, they can live happy and healthy lives.”
Initially most children were infected through blood transfusions, used to treat children with haemophilia or during surgery. Shortly thereafter, SickKids began to see more children infected through perinatal (mother to baby) transmission.
The introduction of combination antiretroviral medications in 1997 revolutionized care for people with HIV and survival rates increased. Before this, patients were treated for their symptoms rather than the virus itself, and palliative discussions were commonplace. None of the HIV-positive children born after 1996, who were cared for at SickKids, have died.
The basis of preventing infection in babies is to ensure that all pregnant women are tested for HIV. “This was a challenge at first because of the stigma associated with HIV, but in order for this to work it needed to be implemented system-wide,” says Dr. Ari Bitnun, Physician in Infectious Diseases at SickKids. “If we know that the mother is HIV-positive then we can take the medical precautions to ensure the baby is born uninfected.” Prevention of transmission from mother to baby is achieved by treating the mother with combination antiretroviral medications, providing her with a specific intravenous medication during labour, delivering the same medication orally to the baby for the first six weeks, and not breastfeeding. Because of these interventions, it is now rare to see an infected baby in Canada.
From the beginning, the team understood that children and families living with HIV needed more than medical care. “We saw whole families sick and dying of the disease; it was the first time that the impact of an illness on an entire family was so apparent to me,” says Cheryl Arneson, the program’s first nurse coordinator and its current clinical research nurse. Recognizing that HIV affected not just the individual patient, but often the whole family dynamic, the team took a multidisciplinary approach to ensure that all aspects of care were addressed. The team included doctors, nurses, a social worker, psychologists, a psychiatrist, chaplaincy and others. Illustrating their passion and commitment to caring for families with HIV, today more than half of the original team is still working in the program.
For many of the patients and families the team at SickKids became a second family. “We were willing to do things differently to provide the best possible care for our patients. We saw that the issues were not just medical and began learning about the complex psychosocial issues facing our patients,” says Arneson. The team provided care for everything from prevention to death, and went far beyond their job descriptions taking on the roles of counsellors, educators, advocates and caregivers. “In many cases early on, we were the only people that the families trusted and confided in, and we have always taken this responsibility very seriously.”
Over the years, the support provided by the team has evolved from helping families deal with the death and dying process to now helping them live normal, healthy lives. Today, common psychosocial supports include helping parents through the process of disclosing HIV to their HIV-positive children, guiding teenagers as they transition to adult health care, providing newcomer immigration and resettlement support, assisting with income support, maintaining drug insurance, making disclosure decisions, and helping family members to communicate with each other.
“What makes us all very proud is seeing our patients graduate from the program and go on to live their lives pursuing a future and a career. It’s also so impressive to see the leadership role they take on in supporting other children and families living with HIV,” says Read.
Now that the disease can be managed effectively through daily medication, one of the main issues is medication adherence, especially among teens. Because many of the patients have been treated for HIV since birth, they have never felt sick or experienced a health crisis; it would therefore be more tempting for them to skip doses of their medication. One patient who has transitioned into adult care said, “I always felt that the team was being dramatic about how important it was to take my medicine every day. I felt fine, and was trying to live a normal life. My daily meds were a constant reminder that I was, in fact, sick.”
With HIV being more of a chronic illness, there isn’t the same sense of immediate crisis as there was a quarter-century ago, but there is still work to be done. Making sure that children graduating to the adult health-care system are retained in care is a priority and in terms of prevention, ensuring that all pregnant women are tested for HIV is critical. Future research endeavours at SickKids include exploring the long-term impact of the medications used in pregnancy on child health and development, as well as searching for a possible cure.
Patients and staff share their personal stories to commemorate the 25th Anniversary of the HIV Comprehensive Care Program at SickKids.
About The Hospital for Sick Children
The Hospital for Sick Children (SickKids) is recognized as one of the world’s foremost paediatric health-care institutions and is Canada’s leading centre dedicated to advancing children’s health through the integration of patient care, research and education. Founded in 1875 and affiliated with the University of Toronto, SickKids is one of Canada’s most research-intensive hospitals and has generated discoveries that have helped children globally. Its mission is to provide the best in complex and specialized family-centred care; pioneer scientific and clinical advancements; share expertise; foster an academic environment that nurtures health-care professionals; and champion an accessible, comprehensive and sustainable child health system. SickKids is proud of its vision for Healthier Children. A Better World. For more information, please visit www.sickkids.ca.