COVID-19 Essential Patient Resource: Pharmacists

By: Glen Pietrandoni, RPh, AAHIVP, VP Industry Relations, AVITA Pharmacy

Pharmacists have been on the front line of the COVID-19 response to ensure patients remain safe and continue to receive essential medicines on time. Pharmacists are the most easily accessible healthcare professionals in the community. No appointments are necessary, and pharmacists don’t charge to speak with them!

Since the pandemic began, pharmacists have spent a lot of time educating people about COVID-19, and reinforcing messaging about how to reduce the spread, social distancing, hand washing, masks, etc. This is especially important where some may think they don't have to worry about the virus, or if it is not yet present in their community. Let’s face it, there’s a lot of mixed messages around the country. Pharmacists can help provide trusted information to help you and your family, absent of political views or stigma.

Forty years of helping people thrive within the context of HIV treatment and prevention gives pharmacists and patients an advantage today as we have learned how to care for each other during difficult times in the past. Most importantly, the need to continue a high rate of adherence to medication does not change because of this disruption in our daily routine due to the coronavirus. We are all champions for U=U. To stay undetectable during a pandemic of this new virus, we cannot let up on being adherent to the drugs for the old virus. YOU CAN DO THIS, and pharmacists can help.

I have often written and spoken about the importance of having a relationship with your pharmacist and pharmacy staff. That could be as simple as making a point of engaging in a simple conversation, for instance, asking their name, or asking if you can ask questions from time to time.  I’ve mentioned in the past that it’s more common to know the name of the person that cuts your hair or the barista at Starbucks, than to know the name of your pharmacist. If the pharmacy you are using pushes back or doesn’t make that easy for you, then you might want to consider looking for a pharmacy/pharmacist that understands HIV and YOU. You deserve that courtesy!

Let’s talk about how pharmacist can help you during the COVID-19 pandemic and beyond.

Pharmacies have remained open during the outbreak

You may need to check if the operating hours have changed, but pharmacists are considered essential workers and have been eager to accommodate unusual circumstances when possible. Try to plan ahead for refills if possible, as the pharmacies might be busier than usual.  Also, if your insurance or ADAP (AIDS Drug Assistance Program) plans require renewal or recertification, check into this before you are out of medication to avoid delays. Many pharmacists can help you if you have questions. With COVID-19  exceptions are being made to allow grace periods and extensions.

Consider requesting 90-day refills if the insurance coverage or ADAP allows.

Pharmacies often offer delivery options

Pharmacies continue helping people – particularly the most vulnerable – get prescriptions filled online or remotely, and have medications delivered to your home. Check with you pharmacy about options and potential cost of delivery.

By helping you stay healthy

Pharmacists can speak with you regarding your medication questions because they can see your prescriptions from all your providers in one place. Pharmacists can help you at times when you need prescription refills by contacting your doctors for you. During this time, providers are also very busy and difficult to reach. Pharmacists work closely with providers and could save you some time and stress.

Did you know you pharmacist can synchronize your medications to minimize the numbers of trips to the pharmacy or deliveries? Why not get all your medications at one time. That you also help you stay adherent and not run out of medication.  Makes sense! Another part of the pharmacists’ job is to check for drug interactions, monitor for potential adherence challenges and help you manage side effects or adverse reactions. 

Many pharmacies have apps to help people manage their health and medications. These have become more useful during COVID-19, allowing patients to manage medications through alerts for refills and even dosing reminders. We’re all a little more stressed than usual, so it might be worth trying these out.

By helping you save money 

Some people have prescription copays (money due to the pharmacy paid by the patient). It’s a good idea to ask you pharmacist (you know their name now, right?) if they are aware of ways to save money on out-of-pocket costs.

Now that you know your pharmacist’s name, it will be nice to speak to a friendly voice every month or so. In this time of COVID-19, isolation and depression can be a concern for so many people. As a pharmacist myself, I know that building relationships with my patients over time allowed me to check in with them monthly. In that interaction, our relationship provides some comfort and opens the door for questions and conversations. My favorite question to my patients were things like “how’s your dog?”, or “do you have a restaurant recommendation?” In doing this, I get a sense of how my patients were doing emotionally and is an indirect way to check on their well-being. Of course, with coronavirus, it is so important to stay connected, the questions are more directed toward staying safe and taking precautions. Because the relationship exists, this is an easy pivot based on mutual trust.

At this time, we can all use a helping hand and a friendly voice. Pharmacists can be that someone that fits this role during covid and long after.

Click here to download the "Talking to Patients About Access to Medication - A New Resource" published by the Community Access National Network (CANN) and the Partnership for Safe Medicines (PSM).

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

CMS Declines To Enforce New Co-Pay Rules It Put In Place

By: Marcus J. Hopkins, Policy Consultant

One of the arguably good changes brought forth by the Affordable Care Act (ACA; AKA – Obamacare) was the ability to use Ryan White (RW) Part B funds to purchase and pay private insurance premiums and co-pays for AIDS Drug Assistance Program (ADAP) clients. This, in addition to shifting some clients off of RW and onto state Medicaid programs in those states that expanded Medicaid, allowed state RW programs to shift some expenditures and costs off of their budgets by no longer paying directly for medications and, in some states, treatment costs.

One of the negative consequences of the ACA’s implementation has been the creation and proliferation of so-called “Co-Pay Accumulator Programs” – management tools used by Pharmacy Benefit Managers (PBMs) and other health plans that excludes co-pay assistance coupon and program payments from counting toward patients’ deductibles (Schweitz, 2019). This concept essentially allows insurers and PBMs to accept the payments received from the utilization of these co-pay coupons and Patient Assistance Programs (PAPs), not count those payments toward patients’ deductibles, and later demand and collect additional deductible payments after the co-pay assistance runs out for patients.

This practice has been widely criticized in a time when pharmaceutical prices have been (rightly) deemed out of control, too high, and unconscionable. Patients rely upon these manufacturer coupons, PAP assistance, and other discount programs to reduce the high cost of drug co-pays to as little as $5 or no cost from potentially hundreds of dollars per medication fill.

Photo Source: AIMED ALLIANCE

The current administration has repeatedly promised that it would lower the cost of prescriptions, though it has done little to deliver on said promise. One of the few positive steps it had taken was the announcement in its 2020 Notice of Benefit and Payment Parameters rule that “…co-pay assistance from drug companies must count towards a patient’s deductible and out-of-pocket maximum in most cases.”

That decree lasted about as long as any other policy decree from this administration.

On August 26th, 2019, the Center for Consumer Information and Insurance Oversight (CCIIO) released an FAQ (found here) stating that this rule, set to go into effect on January 1st, 2020, will now not be enforced, nor will states be required to enforce the pro-patient rule, because enforcing it might conflict with rules set forth by the Internal Revenue Service (IRS) that allows High Deductible Health Plans (HDHPs) to not count co-pay assistance toward deductibles.

Photo Source: CMS

So, essentially, the health insurance companies win.  Again.  And again.  And again.

ADAP funds may be used to pay for clients’ co-pays, premiums, or both, depending upon the state, and for those clients who live in states where ADAP only pays for premiums, they may rely upon co-pay coupons to afford their medication co-pays.

To put this in personal terms, my Biktarvy (Gilead) co-pay is $250/month. Because I live in WV, the state covers that co-pay amount. However, if I lived in another state where that wasn’t the case, I could potentially use Gilead’s Advancing Access® Medication Co-Pay Card, which pays $3,600 annually toward co-pay costs. That amount would pay for 14 months of my $250 co-pay, essentially delivering a medication for free for an entire year…unless the PBM that services the insurance plan’s prescription program uses a Co-Pay Accumulator Program, so that none of those medication co-pays count toward my deductible.

For anyone who thinks that this move by the Centers for Medicare and Medicaid Services (CMS) is an accident, don’t kid yourself: this isn’t a glitch; it’s a feature. This administration’s CMS has consistently moved in ways that raise prices and complicate healthcare access for patients, from authorizing (likely unconstitutional) work requirements for Medicaid programs in Arizona, Arkansas, Indiana, Kentucky, Michigan, New Hampshire, Ohio, Utah, and Wisconsin, to changing the way the Modified Adjusted Gross Income (MAGI) – the measurement used to calculate eligibility for assistance programs – is calculated. CMS Administrator, Seema Verma, has consistently ranked high on the Cruella de Vil Scale of Human Empathy, frequently siding against the interests of patients in her administration of federal healthcare programs.

Caught in the middle of this battle between private insurance profits and purported (but undelivered and undeliverable) savings for federal programs is the patient, who has seen their access to medications consistently slip further and further out of grasp. It is time, once again, for Americans to decide which is more important: the value of money or the value of human life. Sadly, I’m not at all confident that we will make the right decision.

References:

• Schweitz, M.C. (2019, January). The Cost-Shift Conundrum of Copay Accumulator Programs. Thorofare, NJ: SLACK Incorporated: Healio: Healio Rheumatology: Practice Management. Retrieved from: https://www.healio.com/rheumatology/practice-management/news/print/healio-rheumatology/%7B04769e45-fca4-4ce6-90be-8f441d6afc7d%7D/the-cost-shift-conundrum-of-copay-accumulator-programs

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

Healthcare is Hostage to Rx Pricing

By: Michael Weinstein, President, AIDS Healthcare Foundation

The impossible has happened. Harvoni, a pill that cures Hepatitis C made by Gilead, is selling for $1044 per pill. Decades ago we were outraged at the high price of AZT which was the first anti-retroviral HIV medication to come to market. Now the price of drugs threatens the long term viability of the entire U.S. healthcare system.

Gilead did not discover Harvoni. It bought the primary compound from a company named Pharmasset for $11 billion. That money came almost entirely from huge profits made by Gilead from the sale of grossly over-priced HIV medications. Pharmasset had planned to charge $36,000 for their drug. But, Gilead was not satisfied with that price and decided to push the envelope all the way up to $94,000 for a three month cure for Hepatitis C. During the same year, John Martin the CEO of Gilead, had total compensation of $206 million.

Michael Weinstein, AHF President, leading a protest.

Anger over drug prices has made this the number one healthcare issue by far among the American people. Presidential candidates Hillary Clinton, Bernie Sanders, and Marco Rubio are condemning Pharma on the campaign trail. Senators Charles Grassley and Ron Wyden are denouncing Gilead and other companies and conducting investigations. Yet, not a single piece of significant legislation is likely to be passed at the national or local level. A simple bill that would have required a little more transparency by drug companies was squashed twice in the last year in the dark blue state of California. Pharma's contributions to candidates on both sides of the aisle combined with vast lobbying budgets make passing legislation impossible.

Citizen ballot initiatives are one of the few avenues available to start to change the system. In fact, ballot initiatives were created to allow citizens to directly enact legislation when their elected officials refuse to act. Which brings us to the California and Ohio Drug Drug Relief Acts that will appear on their respective ballots in November. Pharma is so threatened by these initiatives that they have already contributed $40 million to defeat it in California and are trying every legal trick in the book to keep it off the Ohio ballot.

Pharma is working very hard to try to confuse the issue and pick apart the initiative because polling shows that 78% of California voters would support the initiative. First, to be clear this initiative is only a start to reining in drug prices. It is a very simple concept. The state will pay no more than the Veterans Administration for any drug. Critics, many of whom are directly funded by Pharma, say that the initiative can't be implemented and want us to address every hypothetical implementation issue. That is not our job. That will be the state's job after the initiative passes.

You don't have to believe us about how important these initiatives are in giving voice to the anger over drug prices. Here is what PharmExec.com had to say on December 8, 2015:

"If the voters of California approve this proposition it would establish an incredibly deep, mandatory discount - in essence a "price control" - for the public purchase of prescription drugs in American's largest state. Such an action would not doubt cause an immediate demand for the same VA discount rate to be made available to other states, the federal government, and likely private entities as well. In short, adoption of VA pricing by the State of California would be a pricing disaster for the entire U.S. drug industry."

The California and Ohio Drug Price Relief initiatives can be a catalyst for a movement to stop the rampant greed of drug companies with your support. Please don't be distracted by all the dust the industry will try to throw up to try to divert attention from the real issue - an out-of-control system that is victimizing our country.

Editor's Note: This blog was submitted in response to our previous blog, "Is Ohio the Frontline in the War on Rising Drug Prices?"

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Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates. 

Is Ohio the Frontline in the War on Rising Drug Prices?

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

Ohio, which is the 7th most populous state in the United States, is quickly shaping up to be the battleground over the rising cost of prescription drugs. The Ohio Drug Price Relief Act is a voter initiated statute spearheaded by the Ohioans for Fair Drug Prices and the AIDS Healthcare Foundation (AHF). The ballot initiative attempts to bring state prescription drug costs -- such as medications covered under the AIDS Drug Assistance Program (ADAP) -- in the Buckeye State in line with the lowest price made available to the U.S. Department of Veterans Affairs.

If the Ohio Secretary of State's Office certifies the signatures -- in which 91,677 valid signatures of registered voters are needed -- then the next step in the process would be the Ohio General Assembly taking up the legislative measure. If state lawmakers failed to approve the legislation within four months, then the petitioners could attempt to place the initiative on a statewide ballot for referendum.

According to Ballotpedia:

“The Act would enact Section 194.01 of the Ohio Revised Code to require that notwithstanding any other provision of law and in so far as permissible under federal law, the State of Ohio shall not enter into any agreement for the purchase of prescription drugs or agree to pay, directly or indirectly, for prescription drugs, including where the state is the ultimate payer, unless the net cost is the same or less than the lowest price paid for the same drug by the U.S. Department of Veterans Affairs."[1]

Among other provisions, the Act also:

• Sets forth the title of the Act as "The Ohio Drug Price Relief Act."
• Sets forth Findings and Declarations and Purposes and Intent of the Act.
• Sets forth factors in determining "net cost."
• Authorizes state departments, agencies and other state entities to adopt administrative rules to implement the provisions of the Act.
• Provide that the Act shall liberally construed to effectuate its purpose.
• Provide that if any provision of the Act is held to be invalid, the remaining provisions shall remain in effect.
• Provide that if the Act is challenged in court, it shall be defended by the Attorney General.
• Declare that the committee of individuals responsible for circulation of the petition ("the proponents") have a direct and personal stake in defending the Act and any one or more of them may do so in court if challenged. Provide that the proponents shall be indemnified by the state for their reasonable attorney's fees and expenses in defending against a legal challenge to the Act. Provide that the proponents shall be jointly and severally liable to pay a civil fine of $10,000 to the state if the Act or any of its provisions are held by a court to be unenforceable, but shall have no other personal liability.
• Provide that in the event that the Act and another law are adopted by the voters at the same election and contain conflicting provisions and the Act received less votes, the non-conflicting provisions of the Act shall take effect.
• Require the General Assembly to enact any additional laws and the Governor to take any additional actions required to promptly implement the Act.[2]

The fight over the ballot initiative has pitted familiar foes against one another, with AHF leading the charge in favor of it, and the Pharmaceutical Research and Manufacturers of America (PhRMA) -- which is the pharmaceutical industry trade association -- trying to squash the measure. The main criticism of the measure is the lack of specifics, including over how it would be enforced.

Upon announcing that the signatures had been submitted to the Ohio Secretary of State, said AHF's president Michael Weinstein, “While we’ve seen ample evidence that there is seemingly no limit to the corporate greed of pharmaceutical companies, we also know that Americans are tired of feeling afraid every time they go to the doctor or it’s time to get a prescription filled. Astronomical prescription drug prices hurt everyone—except the drug makers’ bottom lines. This has got to stop.”[3]

There remains considerable uncertainty over the outcome of the petition effort, as well as what lies ahead with this ongoing debate in Ohio.

“As I had testified to the Ohio Ballot Board, this well-intentioned but sloppily written ballot measure will have no real effect on drug prices due to trade secrets and lack of a verifiable reference source," argued long-time Ohio resident Eddie Hamilton, Director of the ADAP Educational Initiative. "What it will guarantee is lawsuits whose legal fees will be borne by Ohio taxpayers."

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[1] Ohio Secretary of State,"2015-07-21 petition," July 21, 2015; Last viewed online at http://www.sos.state.oh.us/sos/upload/ballotboard/2015/2015-07-21-petition.pdf. 

[2] Ohio Secretary of State,"2015-07-21 petition," July 21, 2015; Last viewed online at http://www.sos.state.oh.us/sos/upload/ballotboard/2015/2015-07-21-petition.pdf. 

[3] BusinessWire, "AHF: Advocates Submit 171,205 Signatures for 2016 Drug Pricing Ballot Measure in Ohio," December 22, 2015. Last viewed online at http://www.businesswire.com/news/home/20151222006046/en.

Losing Access to ADAP: What It Means to be HIV-Positive

Checklists. Every individual and organization has one in some sort of fashion, including the U.S. government. Whether they are logged into memory or jotted on paper it lists tasks to be completed usually in a specific priority. At some point or another everyone has endured that feeling of accomplishment when one of these “To Do’s” has been fulfilled and crossed off the list. This week in America the government proved to its people that they could cross off a task in their own agenda by killing Osama bin Laden. The next task that the government should surge their efforts towards in the interest of its citizens here at home: addressing the ongoing AIDS Drug Assistance Program (“ADAP”) crisis and how the number of patients losing access to this much needed program is not only rising, but getting fiscally worse. It must be illustrated to those [with the power to solve this problem] on what it means to be HIV positive today and the consequences of ignoring this issue will result in a financial burden on all Americans.

Doctors, therapists and social workers endlessly explain to the HIV patient that exercise, a well-balanced diet, and a stress-free environment are not only beneficial, but also vital for keeping the virus from developing internally and taking over. Of course, none of these variables are possible unless the patient adheres to the life-saving medications that allow them to be productive in their lives and keeps them from a hospital bed. And up until the recent years even with new infections the fatality rate from AIDS-related complications has significantly decreased. Applause for this breakthrough goes not only towards the medications that have been discovered to keep HIV-positive individuals healthy, but most importantly to the Federal and State government-funded program, ADAP through Part B of the Ryan White Care Act. Without this program, some speculate that HIV/AIDS would triumph as the leading cause of death in the country. For thousands upon thousands of HIV-positive individuals nationwide this “payer of last resort” is the only access they have to receiving the medications and medical care needed for ongoing sustainment as well as preventing the spread of the virus to non-infected people.

With that said, there is a shared anxiety in the HIV/AIDS community at the fact that this program is in jeopardy beyond extreme measures. Although the community is grateful that the President has ordered an additional emergency $25M in funds to Ryan White in FY2010 and its been further ordered for the continuation of some funds in the FY2011 budget (when so many programs have been cut in other committees) it must be pleaded that it isn’t enough to keep ADAPs afloat for another year. The continuation of insufficient funding for this program will not only definitively throw more HIV-positive individuals on waiting lists in the most obvious manner (7,674 in 11 states as of 4/22/11) but more individuals will be rejected altogether. Sadly, it doesn’t stop there: Eleven states with waiting lists will soon turn to 20, or 30, and soon all states and U.S. Territories will fall into this trap. Will this problem be addressed then?

With an unstable economy still at large many Americans, especially HIV-positive individuals, find themselves working two jobs in an attempt to pay the bills and get ahead. One job has no insurance and the other job has an insurance plan that doesn’t cover the HIV medical necessities. An individual that fits this example will most likely not qualify for ADAP even if they make only $500 over the eligibility limits in their state. Consequently, two-thirds of their salaries go towards monthly prescriptions and medical costs. The remaining few extra dollars at the end of the week doesn’t always cover the rent, food and bills. Sooner or later a definite choice will have to be made as to what’s more of a priority to pay for- the roof over their head or for groceries or for another month’s supply of medications and overdue blood work. In other words, ending up on the streets, starving or allowing the virus to strengthen, spread within and onto others and ultimately take over both physically and financially for all? Let’s not forget the rising stress levels from working two jobs under the influence of a compromised immune system. In this lose-lose scenario the individual’s health deteriorates because of no exercise, poor diet and high stress. The only hope for this individual is to be accepted to the ADAP program - with a price to pay by giving up one job and slashing their income by more than half. At least in this case this person’s HIV medicine, blood work, and doctor visits (all covered by Ryan White programs) will be covered. But, what happens when they are thrown off the program because the State had run out of funds? Out comes the virus from its hideout ready to take on more victims and dollars from the taxpayers.

Finally, if all the recent talk about lowering the Federal Poverty Level (“FPL”) for the ADAP program in some states gets approved then the result sets HIV-positive individuals in danger of still making too much money- even on one salary. There is no question these people, who so desperately need the help, will get kicked off the ADAP program for sure. To utter it once more- poor diet, lack of exercise, increase in stress level, and hardly clinging on to what pills are left in the pill box- will the virus take over? The answer is YES, without question or argument. Thousands of Americans are victims to this and thousands more are already in danger of falling into this category under the same foreshadowing issue. Scarily, these “thousands” will turn to millions in the coming years if this topic is not addressed. Is that what it will take for the government to understand that HIV/ AIDS and the ADAP Program under Ryan White are once again situations that cannot continue to be overlooked?

This is a true story of what it’s like to be HIV-positive in this day in age. One can only pray that all the wonderful testimonies about how healthy individuals have become thanks to the progress in medications and treatment will not become a story of the past. When diagnosed with HIV its assured by so many that a full life expectancy is imminent. That may no longer be the case.

Access to ADAP is the treatment livelihood for countless Americans living with HIV/AIDS, and it needs to be a top public health priority in the government. “Fighting to survive” should never be on any HIV-positive person’s checklist in this day in age.

Blog by Christopher Myron, ADAP Advocacy Association member from New York City