As a journalist who spends his time digging for facts about the business of medicines, I’m going to wax idealistic. If I kept a wish list of things that would make my job easier to do — and more rewarding — transparency would be at the top.

Simply put, transparency is lacking — way too often. Be it a government official or a company executive, statements flow like water, but documentation to back it up? Not so much. Plans are touted and objectives are stated, but not enough details are disclosed to understand and track what may happen.

An important topic that merits attention is prescription drug affordability. This is a key concern for patients and policymakers around the world. Affordability is a useful way to illustrate the issue because it is a flash point in the never-ending debate over access to medicines that regularly pits drug makers against cash-strapped governments.

One notable example involves Gilead Sciences, which dominates the market for HIV treatments. Two years ago it reached voluntary licensing agreements with six companies to make and distribute generic versions of its groundbreaking injectable HIV prevention drug, called lenacapavir, to 120 low- and middle-income countries.Reference Silverman ¹

The deals were made in response to criticism that the $42,250 price tag would be out of reach in many places. The agreements are significant because the drug, which must be administered only twice a year, was shown in clinical trials to be extremely effective in preventing HIV. As a result, the Gilead medicine offers hope that the World Health Organization’s goal of eradicating the disease by 2030 may be within reach.

But there is a hitch, a big one. Gilead never disclosed an actual price or a formula for how prices are to be calculated. Pricing was also not disclosed in a subsequent distribution deal in which Gilead is working with the US government’s President’s Emergency Plan for AIDS Relief, or PEPFAR, and the Global Fund to Fight AIDS, Tuberculosis and Malaria.

Why does this matter? The failure to provide pricing has angered patient advocacy groups, which argue that too many poor nations may be unable to properly budget funds for purchases. ² The lack of pricing information could mean that countless people will unnecessarily be delayed gaining access to the Gilead medicine.

Like any company, Gilead has myriad reasons for disclosing pricing in certain circumstances. Often, this involves competitive concerns to blunt what rivals may do in the same markets or prevent other buyers from seeking a similar price. There can be other factors, such as preserving options for setting varying prices in different locales.

This appears to be the rationale for not disclosing the pricing in the voluntary licensing agreements with the generic makers, which will not pay royalties to the company. At the same time, Gilead is providing the drugs to the Global Fund at what it calls a nonprofit price, and hasn’t disclosed pricing in this arrangement either. ³

But in the rest of the world, Gilead will have the exclusive right to sell lenacapavir and decide its price. And since the generic versions will not appear until 2027 at the soonest, this means that Gilead has time to ring the register.

The lack of disclosure angers patient advocacy groups and health policy experts, who argue that without an upfront pricing commitment by the company and donors, there is a risk that the product rollout will be undermined and the opportunity to mitigate the virus will be hindered. ⁴

Meanwhile, another company, Vertex Pharmaceuticals, has caused a stir in India.

Three years ago, patient groups petitioned an Indian court to issue a government use license for a cystic fibrosis medication called Trikafta. Under World Trade Organization rules, such a license allows a government to authorize a generic manufacturer to make a version of a medicine without permission from the brand-name drug company that holds the patent.Reference Silverman ⁵

The petition was seen as a significant step because the medication treats the most common genetic mutation that causes cystic fibrosis. Trikafta not only improves symptoms but also slows the progression of the disease. Studies showed the medication can be effective in about 90 percent of patients.Reference Middleton ⁶

The reason for this move is that Vertex had not registered Trikafta for marketing in India. Patient advocates maintain that this is a tactic designed to delay generic competition and extend its monopoly, since the lack of registration does not allow a generic manufacturer to market the drug in the country. And the lack of lower-cost generics restricts access.Reference Silverman ⁷

In response, Vertex has started compassionate use programs that might be supplying to around 150 patients in India, according to patient advocacy groups.Reference Silverman ⁸ But the details have never been released about the actual number of patients, which patients receive the drug, and how long the program may last.Reference Silverman ⁹

To some advocates, the maneuver appears to be a public relations campaign to convince the Indian government that issuing a license is unnecessary, because the company is, in fact, taking steps to ensure people who need the treatment can gain access. But without precise data, they also argue that the supply may fall well short of demand.

Here is one final example to chew on. Last year, the Trump administration and Pfizer announced plans to lower prices on numerous medicines. The deal was the first in a series of such agreements designed to force the pharmaceutical industry to offer medicines to Americans at not just lower prices, but at the same prices paid in other wealthy nations.

Pfizer agreed to significantly cut prices on many primary care drugs for conditions like dermatitis, menopause symptoms, and arthritis for Medicaid patients. The company also agreed to abide by “Most Favored Nation” pricing on new products and to list many drugs on a planned “TrumpRx” website,Reference Feldman and Knapp ¹⁰ which the administration claims will enable Americans to pay cash for drugs at discount prices. In exchange, Pfizer would be exempt from tariffs.Reference Payne and Herper ¹¹

Yet the full details were not disclosed. Pfizer, for instance, did not specify which medicines would see price cuts. And though Pfizer announced $70 billion that would be dedicated to new research, R&D, and capital projects in the US over the next few years, the company has not provided complete details on the portion that is new or allocated previously. Since then, more than a dozen other drug makers struck similar deals.

Of course, like any of these other arrangements, Pfizer and the other companies may release sufficient details sooner rather than later. But the failure to do so at the outset makes it hard to know the extent to which Americans might save on the medicines — and presumably widen access — and how much taxpayers will benefit from new construction and jobs.

Had these companies released the information so many are clamoring to know, it would have been easier to assess whether the stated goals would truly yield any benefits, and how soon those might occur. Instead, we are left in vacuums in which corporate goals trump patient needs.

Without question, it’s reasonable — and necessary — to demand transparency standards, stronger disclosure requirements, and collaboration with governments and global health organizations. But after tracking this industry for more than three decades, I don’t expect this to change, at least not any time soon.

Of course, different types of deals can yield different outcomes. If the Trump administration, for instance, adhered to good government practices, the terms of the deal with Pfizer may be known, offering Americans a chance to sort out whether pricing would make one or more medicines more affordable and, therefore, more accessible.

But not every circumstance is the same and, in some instances, pharmaceutical companies make decisions that a government is unable to control or sufficiently influence. That has often left advocacy groups, which hold relatively little leverage, to fill the void, usually by sustained protest and criticism by way of social and traditional media.

One avenue that a government can pursue, though, is a compulsory or government use license. This tactic has been debated when a country is not included in a voluntary licensing deal that a brand-name drug maker reaches with generic suppliers. Two years ago, Colombia found itself in this position after ViiV HealthCare reached a licensing agreement with the Medicines Patent Pool, which is backed by the United Nations, for an HIV medicine.Reference Silverman ¹²

But as advocates learned in India, governments must be willing to pursue a compulsory license since drug makers are likely to file challenges. Advocates pushed Colombia which, earlier this year, was vindicated when a South American tribunal upheld steps the government had taken when it issued a compulsory license for the ViiV treatment.Reference Silverman ¹³

The lessons are clear. Transparency is lacking and it seems that pressure is generally required to either prompt government action or hope that sustained negative publicity will convince companies to alter their plans. Otherwise, access and affordability will remain contentious topics for countries rich and poor.