Medicines : when the State decides who lives, who dies

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Patrick Déry

Friday, 22 December 2017 16:56

UPDATE
Friday, 22 December 2017 17:16

Look at this article

Who would you trust more for your survival? To the market or the State? Think about it, and read what follows.

Do you know what spinal muscular atrophy? It is a degenerative disease cruel, more severe cases involve very young children. They often do not have the strength to walk or sit, and sometimes even eating or simply breathing.

Children with the most severe die before their second birthday.

Spinal muscular atrophy is a rare disease. A few dozen children would be affected in Quebec. There is a drug, the Spinraza, which can stop the progression of the disease or reduce its symptoms, but this medicine costs several hundreds of thousands of dollars per year, for each patient.

In the United States, the Spinraza has received the endorsement of the Food and Drug Administration a year ago. Health Canada has taken seven months to make the same verdict.

To pay or not to pay?

Once the approval is obtained, the drug can be sold. The public insurance plans, drugs, themselves, begin a process of review to determine the effectiveness of the drug against its cost, and recommend or not adding it to the list of reimbursed medicines.

In Quebec, the responsibility for making this decision is up to the national Institute of excellence in health and social services (INESSS). INESSS has determined that, for patients with spinal muscular atrophy types 2, 3, or 4, the effectiveness of the Spinraza had not been demonstrated, and that it should not be refunded.

For type 1 patients, either children who have good chances of dying before having celebrated their second anniversary, INESSS has recognized a degree of effectiveness of the treatment. But he does not believe that it should be repaid. Too expensive. The minister of Health agreed with the decision of the organization.

Yet, in the United States, the majority of patients are now covered, or about 80 % of those insured under a private plan, and about two-thirds of those who depend on a public plan.

Elsewhere in Canada, in the last few days, and the family has received a Christmas gift unexpected learning that their insurance company agreed to reimburse the costs of the medication to their child. It is an older child, with the type 3.

I summarizes. An “evil” pharmaceutical company, has agreed with the “bad guys” insurers, all of the “wicked” capitalists, so that patients are treated with a drug that is very costly, first in the United States, and now Canada.

But our “good” government said no.

The interest of manufacturers, insurers, and ours

Of course the drug manufacturers act in their interests. Of course, these companies seek to recoup their investments. It remains that to succeed, they must find a way to make their drugs accessible, even the most expensive.

The insurers also act in their interests. Their profitability and even their survival, depends on their ability to collect more in premiums than what they pay to their insureds. But they are also in competition with other insurers, who woo the same customer base. If they are too pingres, they will lose the insured, which will not be to their advantage.

In both cases, these companies have to make money. But to survive and prosper, they need their customers. If they ignore them it is at their peril.

The logical state is not the same. The government will always be there, whether we like it or not. It is not in competition with another government for the collection of our taxes and fees or for the provision of services. This is true on a local scale, for emergencies, for schools. Even if individuals are struggling, the system is often inhumane and insensitive to the needs of citizens.

The recent refusal of the INESSS to repay the Spinraza for the most severe cases of spinal muscular atrophy is an example particularly disheartening.

The government seeks to limit its spending. It is not in a corporate logic where it is looking for ways to generate revenues and achieve profitable operations, only to limit its costs. And to achieve this, it imposes limits and quotas of any kind. All of our health care system is based on this logic.

The case of the Spinraza should reflect on those who argue for a public monopoly on the drug. Unless they prefer as it is the State who decides who lives and who dies.

Merry Christmas anyway.

p. s. The equivalent of INESSS for the rest of Canada released its decision today, while I was writing this post. The recommendation is to reimburse the Spinraza for the most serious cases, to certain conditions.

To reach me : patrick.dery@iedm.org

Ma page Facebook : @patrickdery.ideas