Societal responsibilities

Every society has a responsibility to treat patients with a genetic disorder.

Several years ago, I wrote about an article about injustice. Because of recent developments, I want to bring this to your attention again.

I believe there is something fundamentally wrong in our society when outrageous sums of money are spent dealing with the negative effects of tobacco use in the United States and other countries when at the same time patients with life threatening diseases must routinely face gigantic hurdles to access healthcare. I was triggered by the following article that I read:

Excerpt from:
FDA Regulation of Tobacco Products
By Lawrence R. Deyton
Source: “Food and Drug Law, Regulation and Education”
May/June 2011 Edition

“It is difficult to overstate the toll tobacco use has taken on the United States. Each year smoking kills approximately 443,000 Americans; more deaths than from HIV/AIDS, alcohol use, cocaine use, heroin use, homicides, suicides, motor vehicle crashes and fires combined. No fewer than 8.6 million smokers suffer from at least one serious illness. In addition to is incontrovertible impact on public health, cigarette smoking also has a corrosive impact on our economy. We know that smoking generates $96 billion in medical costs and rubs our economy of $97 billion in productivity annually just from those who die prematurely. Yet today, 26 percent of US high school students currently use tobacco products. In addition, an estimated 4,000 young people start smoking each day and 1,000 kids become regular smokers”

Recently we heard the news about the damages of vaping when using e-cigarettes, another risk for the health of many young persons. Pulmonologists in different countries expressed their concern with young people using flavored e-cigarettes and ending up with lungs that look 50 years older. We even have seen deaths from that new habit.

For me the impact is the same. The costs for self-induced illness are exorbitant – the article quoted above provide the numbers to flesh out the extent of the problem. Even with today’s understanding of nicotine’s deadly attraction, cigarette smoking, pipe smoking etc., still seem to be accepted by our society. I will not deny individuals the right to smoke in such a way that their smoking does not endanger others around them. That is a personal decision that everyone has the freedom to make. Every person who uses tobacco products is informed about the risks and understands the consequences. The problem that I see is that these persons not only choose to pay large sums of money for their addiction but expect the societal health care system to help treat the common illnesses that result. I find it difficult to accept that society must pay for the costs associated with the personal decision.

What about the many patients that need care? Whether this is hemophilia, immune deficiency, alpha-1-trypsine deficiency, hereditary angioedema, chronic inflammatory demyelinating polyneuropathy, none of these patients made a voluntary choice to have this condition, most are genetic disorders that they were born with.

The patients that we are talking about represent small numbers. The total number of patients that the plasma protein therapeutics industry is serving in the United States, does not even meet the criteria for an orphan drug (patient population less than 200,000). Yet, the costs of these therapies must be shared by this relatively small population and are higher compared to small molecule drug drugs that are used by millions of people. The result is a relatively higher price per unit which does not necessarily mean high costs for healthcare. We have a societal responsibility to treat persons with genetic disorders. They did not choose a lifestyle that induced their illnesses and they deserve an improved quality of life. We also have a societal responsibility to correct what seems to be wrong. If a country can afford almost $100 billion per year for self-inflicted diseases, we have to ask the question; “Is this really what we want to do?”