In a survey conducted by Patient View, a UK-based company that collects and analyzes the viewpoints of thousands of patient groups, researchers asked patient clusters in 12 countries about their ability to access prescription medications. The United States did not fare particularly well:
Table 1: Ease of Global Patient Access by Location
2. Italy, France
5. Nordic countries
7. Central America/South America/U.S.
13. Eastern Europe
The survey polled 1,000 patient groups worldwide to determine which factors most affect their ability to gain access to medications. And though there are many issues at work here, the single most important is patients' ability to influence the health technology assessment (HTA) process.
More broadly, there are three key criteria that determine the ability of patient groups to influence HTA, including: the ability to create "noise" in the media; having business acumen; and, the ability of groups with similar interests to cooperate with one another.
The importance of influencing the Health Technology Assessment
According to Health Technology Assessment International (HTAi), a health technology assessment is a systematic evaluation of the clinical effectiveness and/or cost-effectiveness and/or the social and ethical impact of a health technology -- in this case a pharmaceutical medicine or a medical device -- on the lives of patients and the healthcare system.
Although assessments vary, in general, an HTA looks at the health benefits and risks of using a technology (medication), as well as the cost-effectiveness of that technology compared with other treatment options.
Why are HIV/AIDS patient advocates so effective at gaining access?
Among those surveyed, advocacy groups representing patients with HIV/AIDS were most successful at gaining access to medications (Table 2). In fact, just 19% of the HIV/AIDS advocacy groups surveyed said that access to medications was a problem -- a notable improvement compared with the 38% who cited this as an issue in 2012.
Table 2: Level of influence on access to pharmaceuticals by disease category
2. Circulatory conditions
3. Mental health
7. Rare diseases/Respiratory
What makes HIV/AIDS patient advocacy groups so successful in accessing expensive therapeutic regimens, such as pre-exposure prophlaxis (PrEP) -- a $15,000-a-year preventive treatment for HIV-negative men who have sex with men and want to decrease their risk of contracting the virus?
To answer this, consider the key qualities that are most often associated with HIV/AIDS advocates. AIDS activist groups have been highly vocal and well-organized since the first groups, such as ACT UP, were formed in the late 1980’s. ACT UP was created in 1987 -- the same year that Azidothymidine (zidovudine) was approved for the treatment of HIV/AIDS.
In the late 1980’s, ACT UP immediately started demanding more HIV-related clinical research, as well as greater access to coverage of various antimicrobial and palliative treatments and any new drugs that might eventually become available. In January 1988, ACT UP Boston protested at the Massachusetts Department of Health and Human Services (DHHS), demanding approval of additional HIV/AIDS treatments and an end to the delays and bureaucracy that had been slowing down the process. Because of their efforts, the antimicrobial aerosolized pentamidine for treatment of Pneumocystis pneumonia (PCP) became accessible to AIDS patients in New England.
Other factors that contribute to the success of these groups include cohesive messaging and good business acumen. Dr. Alex Wyke, CEO of PatientView, notes that, “HIV/AIDS patient groups are good at networking with peer patient groups,” which gives them a stronger voice amidst the cacophony of patient-group demands.
Cancer patient groups want -- and need -- better access
On the other end of the access spectrum, 41% of cancer patient groups reported that gaining access to the oncologic drugs they want is very challenging -- even more challenging than in 2012, when 28% reported difficulty accessing medications.
The cancer groups' complaints reflect a sense of powerlessness and frustration over not being able to negotiate better access to medications or having real influence over governmental health care policies. Ironically, these very groups have some of the strongest relationships with governmental policymakers compared with other advocacy groups.
But as PatientView analysts note, patient groups do not need to be "friendly" with governmental policymakers to improve access to medications. In fact, sometimes the exact opposite is true. Rather, patient groups need to focus on leveraging the factors that are most influential -- once again, the ability to create buzz, good business acumen ,and the ability to cooperate and work together strategically.
As such, one factor that works against cancer patient groups is fragmentation. The lack of a united front dilutes these advocates' messages and sometimes even sends mixed signals to decision-makers. Unfortunately, this makes it impossible for these groups to wield as much influence and power as they would otherwise.
The contrast with HIV/AIDS groups is dramatic. When BioPharma Dive asked Dr. Wyke why there is such a stark difference between the two groups' access, she explained, "HIV/AIDS patient groups command significant respect and are perceived as being independent. Moreover, they clearly represent the views of many with the condition... [G]overnments respect that fact. This also means that HIV/AIDS groups do not worry about upsetting governments with their lobbying. Therefore, they prove more effective."
"Simply put, other patient groups are less unified in their advocacy,” said Dr. Wyke.
Tune in for part 2 of BioPharma Dive's patient access series to learn more about how pharma companies are helping patients become more HTA-savvy.