Why Pankaj Sahni died despite Ayushman Bharat     

He died at the All India Institute of Medical Sciences (AIIMS) on January 19. He had first visited AIIMS in May last year and although doctors were helpful, the teenager practically died without treatment, which was to start two days later on January 21.

His distraught father Vishwanath Sahni blames the bureaucracy, red-tape and the Ayushman Bharat scheme, the name ironically invoking blessings of a long life.

The treatment of the rare disease required Rs 12 lakh which the poor villager from Vaishali did not have. But armed with the Ayushman Bharat card, he brought his son to AIIMS, hoping that the health scheme would ensure free treatment or the insurance would at least cover the cost.

To his shock, he was informed that Ayushman Bharat or Pradhan Mantri Jan Arogya Yojana did not cover Aplastic anaemia. And although Rashtriya Arogya Nidhi (RAN) provided for monetary assistance of up to Rs 15 lakh to the poor for treatment of life threatening diseases, Pankaj was not eligible for it since he was already covered under PMJAY.

The family initially lived on footpaths outside AIIMS but when the cold became unbearable, they took a room on rent and moved from pillar to post to raise the amount needed.

The PMO came up with Rs three lakh. And Bihar chief minister Nitish Kumar eventually agreed to release Rs six lakh for Pankaj’s treatment. AIIMS also agreed to waive off the remaining Rs three lakh of shortfall to start the treatment. But the delay of eight months turned out to be too long and Pankaj Sahni passed away without treatment on January 20.

Aplastic anaemia occurs because of damage to stem cells inside bone marrow, which is the sponge-like tissue within your bones. As a result, the bone marrow makes fewer red blood cells, white blood cells, and platelets.

The autoimmune disorder can be caused by genes you inherit from your parents, some medicines, and certain toxins in the environment, reveals a search on the Net.

Vishwanath Sahni works in a factory in Delhi. The younger of his two sons, Pankaj gave up studies after matriculation, worked in Delhi for a few days but returned to his village once his health started deteriorating. In January last year he was taken to Hajipur, where doctors referred him to Patna. The family spent Rs 1 lakh in 11 days when the hospital advised them to take Pankaj to AIIMS.

He needed bone marrow transplant that would cost between Rs 12 lakh to 15 lakh, he was told. “In May we went to AIIMS where he was diagnosed and donors were also found. In August I was told to arrange for Rs 12 lakh.”

That is when he ran against a wall and learnt about RAN. When doctors asked him to contact an MP, Sahni met Ujiarpur MP Nityanand Rai. The MP was responsive and wrote to the PMO. But after a month he was told by the MP that the PMO would release only Rs 3 lakh.

Two months later, on October 10, he received a letter from the Prime Minister’s Office, in which he was assured financial help of Rs 3 lakh. “I then went to the office of Bihar CM Nitish Kumar and submitted all the documents, pleading for help. It took another month to get financial help from the Chief Minister. We were told in the beginning that only Rs three lakh would be given. The amount was eventually raised to Rs 6 lakh,” he said.

Doctors at AIIMS then said that the remaining amount would be arranged by the hospital. Money was thus arranged. The doctors allotted the bed and also gave the date of admission for bone marrow transplant. Pankaj’s treatment was about to start on January 21, but two days before on January 19, his health started deteriorating. Vishwanath took him to AIIMS where doctors declared him dead.

Vishwanath believes that Ayushman Card is the real culprit. “If I didn’t have the Ayushman card, my son would have been treated under RAN scheme. The Ayushman card is responsible for my son’s death,” he says.

Vishwanath sold the four cottahs of land he had. He also spent the Rs 40,000 he had received as the first instalment to build a house under Indira Awas Yojana.

Last year, Karnataka Health Minister Shivanand S. Patil wrote a letter to the Union Ministry of Health and appealed to include Aplastic anaemia in PMJAY, but no action was taken by the Ministry of Health. In October last year, AIIMS Superintendent wrote a letter to the Ministry of Health, saying that many poor patients were suffering from diseases which were not covered by PMJAY, but these patients were unable to get benefit of RAN because of the rule that beneficiaries of PMJAY would not get the benefit of RAN.