What is Therapy for Primary Hyperoxaluria Type 1 and its Cost?

Understanding PH1: Causes, Treatment Options, and Financial Implications

Primary Hyperoxaluria is a rare disease affecting 1 out of 58,000 people worldwide. It causes your body’s metabolism to malfunction, disrupting the process for turning food into energy. Primary Hyperoxaluria type 1 (PH1) is the most common form, affecting about 80% of people. Read below to understand its treatments and costs in India.

What are the Treatment Options for Primary Hyperoxaluria?

The disease is a recessive, genetic and inherited disease caused by a mutation in the AGXT gene. Doctors treat it mainly with medications and procedures. If lifestyle changes and medicines do not yield results, dialysis and transplants may be advised.

• Prescription Medicine : Since the disease causes a buildup of oxalate, a waste product, doctors suggest prescription medications such as a small interfering RNA (siRNA) agent (Lumasiran). These begins reducing oxalate production shortly after administration, with significant reductions observed within the first month of treatment. Other medications include Vitamin B6, which helps about 30% of people reduce their oxalate levels. 
• Lifestyle Changes : Changing daily habits can significantly help manage oxalate levels in your body. Doctors suggest that people with PH1 should drink at least 3 litres of fluid every day. It helps your body to eliminate waste products and prevent kidney stones. However, you should consult with your doctor to know your exact fluid intake.
• Dietary Changes : Making certain dietary changes may help your body to regulate oxalate levels and prevent complications such as blood vessel blockage in your kidneys. Some foods that doctors recommend avoiding are chocolates, beets, sweet potatoes and nuts. You combine these with calcium-rich foods so that the oxalate and calcium bind together in your intestines.
• Dialysis : People with severe PH1 often develop kidney failure. When plasma oxalate levels exceed 30–45 µmol/L, especially in patients with declining kidney function, doctors may recommend aggressive hemodialysis to prevent systemic oxalosis. It helps to flush out excess oxalate levels in your body, which typical dialysis cannot perform. However, it is usually a step towards liver transplant, which is the only cure for PH1.
• Kidney and Liver Transplant (CLKT) : PH1 can cause End Stage Kidney Disease (ESKD), which requires a Combined Liver and Kidney Transplant (CLKT). This procedure can help stop excessive oxalate production and cure PH1 disease. However, depending on your severity, doctors will recommend whether it is the right treatment path for you.

What are the Costs Associated With PH1 Treatment?

PH1 therapy varies according to the severity of the disease and patient response. Depending on the type of treatment, we have broken down the cost below:

Disclaimer: The costs given here are subjective and may change according to location, severity of disease and hospital reputation.

Does Insurance Cover PH1 Treatment Cost?

While health insurance does not primarily cover PH1 treatment costs, it provides coverage for kidney-related diseases.

Although living with Primary Hyperoxaluria type 1 can be tough, with proper care and treatment, it is manageable. Moreover, with the right insurance policy, you need not worry about financial burdens as well.