Question

What was the ethical dilemma with the pharmaceutical companies and hemophilia patients?How was the quality of life for those affected by these unethical acts impacted?

Answer 1

Ethical Dilemma With The Pharmaceutical Companies And Hemophilia Patients

The disease Hemophilia is mostly characterized in the form of a rare and inherited genetic disorder where a person's body cannot make blood clots. Hence the normal process to stop bleeding from a given cut or injury is restricted or does not occur properly and to its full extent in people with hemophilia. There may also be bleedings with no apparent cause in the hemophiliacs. Therefore, even a minor cut may result in permanent disability or a fatality due to the blood outpours., as it is not controlled through the formation of a blood clot.

The use of friendships, gifts, and financial opportunities for obligating and befriending physicians, pharmacies, and other prescribers, is common in the pharmaceutical industry. The practice is followed by many of the pharmaceutical companies. However, the pharmaceutical promotional tactics to people with hemophilia go beyond the normal scales and norms of promotions. Pharmaceutical companies (that manufacture the drugs for the treatment of hemophilia) along with the specialty pharmacies that sell them are hiring the patients of hemophilia and their relatives to gain a greater inside track in the segment. They also can better access the ways through which it is selling their products through the measure. The companies opinionate that the practice and additional impetuses can provide for better services and products for hemophilia patients, as no one can truly understand the special needs of patients suffering from this genetic and rare disorder. Patients are being also offered career counseling, awards, college scholarships, insurance counseling, and a paid internship.

However, it has been also found that there are people and businesses with dueling roles and dual interests present and involved in the segment. The patients can be misled by the self-interests who while showing that they are friends pursue their profits over the health of the patients. An example case here can be the owner of a specialty pharmacy in the region of Alabama who was convicted for inflating the bill for Medicaid. The pharmacy was paying huge monies and commissions to some of the members of the hemophilic community, for recruiting the patients from it.

There are also consumer advocacy groups operating in the hemophilic segment. While consumer voices are important, a more than normal close relationship between the advocacy groups and the pharmaceutical industry will distort medical as well as public discourses. The association can be exploited by the industry to pressure the legislators, patients, and the buyers to pay for the more expensive formulations as well, the benefits of which may be debatable and may only be revealed after scrutiny.

Impact on Quality of Life of Those Affected by The Unethical Acts

Some members of the hemophilic communities have imposed restrictions on themselves because of the new occurrences, which lays an impact on their quality of life. For instance, some people of the community do not attend the meetings of organizational committees for the cause of hemophilia patients anymore, as they fear unwanted manipulations and contacts. There are also certain rules being put forward by the support groups through which the sales representatives and patients of the events can be better identified. These disciplinary measures may not allow for easy and convenient meetings and discussions, and further add to the hassles of lives of hemophiliacs.

Apart from the scariness and fear the new occurrences and the promotional practices of pharmaceutical companies and specialty pharmacies are causing, there are also other issues involved. The pharmacy benefit managers, as well as the insurance companies, are dictating to the customers what specialty pharmacies they should choose for buying the drugs for hemophilia. The dictations are related to and guided by the promotions of self-interests in many cases, as these managers and insurance companies are the owners of the pharmacies as well. Surveys show that only around 50% of all patients may be involved in the decision-making processes. In some other yet important therapeutic areas, the involvement may be as low as 5%. Hence it is becoming even harder for the patients to acquire drugs for the treatment of this critical and genetic disease. Further, they also cannot buy from a pharmacy that employs their relatives or friends. Any benefit that may come to these patients is hence subdued while the cost of hemophilia medicines is substantially higher and even further increasing.

Hence hassles, economics woes/deterioration, hardships, and inconvenience all spoil and impact adversely the quality of life of hemophilia patient