In China, millions of people live on Viagra, including little girls as young as a few years old.


“We (fellow patients) contacted often, but at every gathering we would that, inadvertently, there were a few less companions.”

Su Mei is a “blue lip” patient. The “blue lip” is pulmonary hypertension, a highly malignant and currently incurable pulmonary vascular disease. Su Mei has formed a WeChat group called “Blue Lips”, which has more than 150 patients. “From time to time, we hear the news that the group is gone, mostly because we run out of money and stop taking our medication.” Su Mei said.

World Pulmonary Hypertension Day is observed every year on May 5. Due to rarity, there is no exact prevalence of pulmonary hypertension in , with some doctors estimating more than 10 million patients. Without effective treatment, these individuals survive an average of only 2.8 years.

Since there is no cure, patients with pulmonary hypertension are treated with long-term medication, but the medication for pulmonary hypertension is expensive and not covered by health insurance. Returning to poverty because of illness and the lack of money to stop medication is the fate of the vast majority of families of blue-lip patients.

“Medicine” and “money” become a life-or-death barrier for all blue-lip patients.

Su Mei’s patient friend, Miss Mao, was just 24 years old and passed away a month after she was weaned off her medication.

Ms. Mao was a nurse in a hospital in Changsha, Su Mei said, “her family really had no money, stopped the medicine for a month, went back to her hometown after an attack, did not rescue … …” Su Mei formed a group of friends, witnessed too many young lives, due to financial reasons, some received intermittent treatment, some simply gave up, and eventually passed away prematurely.

They are called “blue lips” because their lips are often blue-purple due to chronic oxygen deprivation, because the “blue lips” group is a rare disease among rare diseases, and China does not even have accurate epidemiological data on pulmonary hypertension.

Few people are paying attention, the corresponding public interest organizations are few, and even many doctors know very little about this disease. Take Tencent Public Welfare, China’s largest Internet public welfare platform, as an example, the number of “blue lip” related fundraising projects is more than a dozen, accounting for a very small percentage of rare disease projects.

98% of blue-lipped patients are sitting on their hands because they cannot afford the high cost of medical care, 85% are pessimistic and desperate about life because they are suffering from the disease, and 5-10% of patients die every month because they do not receive timely treatment.

High drug costs are one of the most difficult hurdles for patients with pulmonary hypertension to overcome.

In most parts of China, the medical costs of pulmonary hypertension are not covered by social health insurance, and patients are required to pay for their own medicine entirely.

The medications that blue lip patients need to take along with them are anticoagulants and vasodilators, common medications used to treat pulmonary hypertension include bosentan, antirisentan, tadalafil, sildenafil, iloprost (vantavi), etc. The monthly cost of the medication is typically more than $20,000 if the better-performing two-drug regimen is used.

Most patients need to take more than two medications to treat pulmonary hypertension, as well as other complications. If all the drugs from the regular channels are used, the monthly cost can be as little as seven to eight thousand, and as much as tens of thousands of dollars.

Su Mei’s medication is more expensive than others because of complications in her lungs caused by pulmonary hypertension, costing her more than $100,000 a year on medication alone, and she doesn’t know how much longer she can keep up.

That’s a sky-high cost for the vast majority of average families to pay for such a drug. Unbearable. One can only await the judgment of fate when the money is spent.

In September 2019, Henan Xuchang 8-year-old went to the pharmacy alone to buy multiple boxes of “Viagra” video hit the Internet. It was also because of this unexpectedly popular video that many people became aware of the existence and hardship of “blue lip” patients.

What is often referred to as “Viagra” is actually sildenafil, one of the common drugs used to treat pulmonary hypertension.

The video of the little girl who went to the drugstore alone to buy Viagra and live on it, but couldn’t afford it, hit millions of people, with a large number of netizens offering to donate to the little girl.

But the girl’s mother, Shang Jie, knows that the key to unlocking all this is not how much money people donate or what kind of help a particular individual gets, but rather that the whole group gets sustained, cyclical, and socially deserved help – pulmonary hypertension medication can be reimbursed by health insurance.
“The inclusion of drugs in health insurance is our greatest hope.”

This is the common wish of Su Mei, Shang Jie and many blue lip patients and families.

The lack of awareness of the disease in society as a whole, including among doctors and the Health Insurance Board, is the main reason why medication for pulmonary hypertension was not previously covered by health insurance.

“This disease has received so little attention before that it was difficult for even doctors to detect.” Li Jiang, Department of Cardiovascular Medicine, Xiangya Second Hospital, Central South University, said. Ninety-five per cent of “blue lip” patients have experienced misdiagnosis and underdiagnosis, and more than 90 per cent of family members lack knowledge of the disease.

In the Henan Provincial Health Insurance Bureau, they have never heard of the disease of pulmonary hypertension, Sheng Jie told us, “They just one sentence, they have never heard of this disease, how do you want us to give you a response?”

At this juncture, Tencent Public Welfare took the initiative to find her.

Tencent is a platform that brings together tens of thousands of public welfare organizations, over 70,000 public welfare projects, and hundreds of millions of charitable donors. There will be an understanding and discussion when promoting the corresponding public interest projects. The curious phrase “blue-lip patients” has brought them to this group. With a deeper understanding, they discovered the need for social assistance for this group.

At that time, Tencent Public Welfare launched a series of features and reports through the corresponding channels on the occasion of Tencent 99 Public Welfare Day.

“It was only after these news reports came out that we took these pills, What I said is also true. “Shang Jie and other Henan blue lip groups told us that later, Henan Provincial Health Insurance Bureau staff told them that the corresponding policy would be followed up.””On March 17, 2020, Henan Provincial Health Insurance Bureau issued a document confirming that pulmonary hypertension, a variety of drugs, will be included in the medical insurance outpatient reimbursement from April 1.

The NHI has focused on and studied the pulmonary arterial hypertension population as a result of news events and has produced targeted documents and policies. From the south to the north, calls for the inclusion of pulmonary hypertension medication in health insurance have emerged in several provinces and cities across the country.

However, the policy document issued by the NHS is only a guiding opinion and is not a mandatory requirement document.

In the process of implementation, there are also issues that need to be addressed, such as differences in reimbursement standards, differences in the scope of medication used by the health insurance, non-reimbursement for non-hospitalization, the selection of hospitals and pharmacies, and the choice of medications to enter the health insurance.

Pulmonary arterial hypertension medication inclusion in Medicare is only the first step from 0 to 1, with a long 1 to 100 behind.

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